Thursday, November 15, 2012

Head games, feeling profound and progressing

I have not posted in quite some time!  It's not because I have nothing to say.  But I created this to track my progress, or lack thereof, with the CCSVI procedure I had done.  Well that's been well over two years now and things are back to just living with MS.  So I've pretty much just been doing that.  But things most decidedly HAVE changed.  I get started posting these since we all know I find writing cathartic, and then I lose steam as I'm actually writing.  Not sure why.  But it could just be I'm tired.  Tired of fighting this shit for which there's no cure and no help, at least not medicinally.

So I really, really need to focus on the only thing I CAN control; and that is my wellness.  Being a self appointed 'wellness guru' before MS, I'd have thought that was the easy part.  But my motivation to try and be so well before obviously came from a different place than the motivation required to not be well, but just to "be".  My focus now is to not impose any self inflicted wounds on myself.  So here we are.  I have been inflicting self inflicted wounds on myself I suppose but I'm not so sure.  I haven't been exercising much, and that works on me.  But as I write this, I also realize that the will to exercise is not lost, the ability is getting lost.  By the time I get dressed to workout, drive to the gym, walk in and swipe my card, I need a rest!  This does not sit well for the rest of my life as there are things I need to do at home.  I am capable of still doing some things around the house and I'm at the point now where if I go work out, I can't do much of anything else for the rest of the day!  So I suppose I'm wanting some feedback from fellow MS'rs.  How in the hell do I learn how to partition my life like that?

By that I mean I can do a load of laundry or two, then I need to rest or the crash won't be able to be recovered from for an entire day.  So how do you work a little bit (but not TOO much or you won't recover for a day), then rest for an hour, then know you are recharged to a point, work some more, rest some more.  As I read it, it sounds easy, you just do it, right?  It just isn't that easy.  You get stuck sitting and you just don't feel like you even have the strength to get up and do another load, or sweep the floor, or whatever it is; because you can't forget you have to save some to make dinner!  And then to throw the gym on top of not even being able to get my work done?  It just doesn't happen.  And then the HUGE critical parent I have inside of me that makes me so 'task completion oriented' kicks in.  We just have to work out, right?  Isn't it just about the paramount thing in all the MS magazines that we must exercise?  Well life kicks in.  I have a teenage daughter and a wife that works 12 hour shifts.  Dinner doesn't cook itself and 16 year old, active in everything girls, well they're 16 year old active girls.  They need tending to damnit!  I mean I don't have to 'raise' her anymore per se like wipe her butt, but there are banquets for sports, school meetings and all that shit and it seems to never end and I only have the one at home.

So I guess I'm at the point where I can't do it all anymore.  I have to pick and choose what I'm going to do during the day since something just isn't going to get done.  And isn't the point of exercise to make it easier to get through a day?  Well when you have this shit it doesn't work that way.  So I'm picking life first, and if I get the chance to exercise, then I do.  It just doesn't happen very often so I do a few sets of leg lifts and 50 pushups or so and maybe 10 situps.  Doesn't sound like much but you should see my damn face on about the 6th situp! 

And what this all means is the point of this post.  I didn't come back on here just to bitch about progressing and having to choose what to do since I can't do everything I want to do.  The issue with that is that list just keeps getting shorter and shorter.  Not what I want to do, but what I can do.  So since I am always on the lookout for the depression monster, I have to get on here and write and try and sort through this and keep my chin up.  I absolutely know that there are things going on in some people MS heads that physically cause depression.  People don't just get bummed out about having this.  If that was the case, we'd all be depressed.  So I truly think that many peoples' MS causes them to become depressed because of the location of their lesions.  But I also know that if you don't keep it on top and always fight it, you can just slip down into it also, that is what I do not want to do. 

All things considered I'm doing pretty well.  I'm scared as shit right now though.  I thought I was at the precipice of life changing stuff about a year ago.  Well it turns out I was right, if I progress much more I won't be able to walk very well or if at all.  Truthfully, I'm not walking that good right now.  But having the progressive form for as long as I have, I really have to count myself lucky.  And there are those indomitable spirits like my facebook friend Mitch Koppel.  That boys MS has tested him so harshly yet his spirit is amazing.  He's my new idol for attitude and if he can do it, I can do it.  You have to break it down that way I think.  I always loved that line from the Anthony Hopkins/Alec Baldwin movie "The Edge"; he gets the troops motivated to just not give up and die by the line "what one man can do, another can do".  It's very true if you think about it.  There have been times when I didn't have the self confidence to do whatever until I spoke that line to myself.  It's a great line and means so much to me. 

So here's my MS now.  I have that type that seems to just drag everything down all at once.  In some people, they have a very specific disability.  There's a lesion somewhere in their brain that just makes something not work right but leaves other things alone.  Well my whole 'functioning' is just grinding to a halt.  It's either that or I'm just at that point in this disease.  It's like when I get overexerted (it takes so little to do that anymore), everything slows down.  I can hardly stay on my feet, my eyesight goes out, my bladder becomes way out of control (thank God for the stadium pal!, my balance is completely shot, I get dis functionally dizzy, and the pain kicks in all over; not to mention I get super confused and can't think at all and the headache is legendary.  And I also get this new one where my entire body just vibrates.  And this is after maybe doing two flights of stairs and folding a load of laundry.

Since there's nothing I can do medicinally at this point (there never really was) I am keen on stem cell treatment.  There is a group of MS patients I'm involved with who have a group that is getting  treatments and it's going very well.  However, the FDA has decided that your own stem cells are their property and have shut down what's going on and made you have to go into a trial or out of the country.  Those who follow me know what a criminal organization I think the FDA is.  I even have a hard time saying that since I don't want to be a conspiracy theorist, but it's true!  I won't get all involved in my reasoning since it is a conclusion I've come to over the years, but they suck and simply are not out to protect you and I; rather the drug companies.  They have become a lobby, that's it and they are assholes.  I'm starting, so I'll stop on the FDA! 

I also wish I wouldn't have been so gung ho on the CCSVI stuff.  It helped me, of that there is no doubt.  But I was so early and at this point they've learned so much more.  I was "hey, you're neck veins are stenosed, let's put a stent in and open 'em up!".  Now it's all about achieving the right blood flow and they just don't look at just your jugular veins.  But hey, everything has to have a starting point and CCSVI research, I believe, will uncover so much more about the etiology of MS than just pouring all the money down the same rabbit hole that has given us completely ineffective, injectible drugs. 

I have really accepted the lot I have in life.  I know if it doesn't miraculously stop progressing from some miracle, I will be in a wheelchair soon.  If I have gotten here from where I was just 5 years ago, the next 5 are not going to be fun since the tipping points you reach where you just notice you can't do things anymore, are coming much faster now that I'm in such a weaker state.  For me it falls into the category of 'it is what it is'.  There's nothing I can do about it and wailing away doesn't help a thing and probably hastens things along since that would make my attitude suck!

I don't want to post this since it sounds like a total whine job.  But since it's been so long since I've posted anything, I thought I needed to 'set the table' and let you all know where I am at.  So the foreseeable future will have me just hating the weather (this cold can kiss my ass, it makes me stiffen up and want to NOT move), and working on how to make my house liveable for me.  Stair lifts maybe, ramps or lifts to get outside more probably, and all that kind of stuff.  If we can make my house handicap accessible, we can do ANY house.  I heard on the radio the other day about this group:, and I'm going to contact them and see if they can make this house easier to deal with!  And I have to get over the thoughts that I think where I guilt trip myself for not exercising more.  It's like in the back of my mind my critical parent tells me I can exercise my way back into more function.  I'm at the point where it just doesn't work that way and I know it intellectually but I need to really feel it.  I have exercised as hard as I can throughout the last twelve years and I still progress.  So exercising is to attempt to keep the strength you have but in the last year or two it just feels self defeating as I gain nothing except in my upper body.  And since I don't walk on my hands, that only goes so far!

I can't beat this thing.  I know that now, there's nothing available even in the dark corners of the internet!  So the mindset is what it's all about.  Fighting a losing battle yet staying motivated to keep fighting; there's the rub.  And fighting means trying something so I wait for something I can afford (right now, stem cells are 25k, which I don't have) to try.  Even if the outcome is dubious, I will try anyway.  Because then I will have that thing called HOPE.  Such a benign four letter word.  Yet without it, things look bleak as hell.  Hope is where it's at in this kind of fight.  It's manna to someone like me.  I need that mindset I had when I embarked on my CCSVI procedure journey.  You can really ignore a great deal of things when you have hope.  They are all there, they just don't hurt as bad!  I don't care if it's placebo effect or what I just need me some more HOPE!  And I went back and reread some of my previous ramblings.  One thing I'm happy to say I don't do is lament the past.  All who are doing that, STOP!  Talk about self defeating.  I know it's hard to be in a mindset where you know you are going downhill yet you have to stay up for your kids, your spouse, your sanity, but lamenting what you can't do anymore is a sure fire way to make yourself crazy.  You aren't getting ability back when you get to this point.  Even if for some reason my opened veins give me some more, real relief, there will still have to be repair and that procedure does not do that. 

So thank God for my wife, my daughter, my dog, my friends.  It's all it's really about anyway.  You lose the stress over things that you used to worry about that's for sure.  All of the sudden 'everyone's a crazy driver!' as I'm never in a hurry, and things of that nature.  I was right there with them road raging and carrying on before all of this, but none of that stuff really matters when it comes down to it.  To bad you need something like this to happen to realize it.  Live like you were dying and all of that.  But that mindset is simply unattainable unless you are actually in the middle of it.  You can get glimpses, get inspired by things that happen and what not, but you just can't stay there until you're forced to!  I have re read this entry and I don't like it one bit!  I feel like it's all over the map, because it probably is.  All of my past entries had a theme to them.  Maybe this one doesn't because my head's all over the place too!  Directionless and all that.  At any rate, I want to start doing this again on a regular basis as it really helped me in the past.  But I need to keep up with it and maybe THIS will be my purpose and give me some direction.  One can only hope.....

Saturday, September 10, 2011

It's been awhile

I have not blogged for quite a while. It seemed like I was going to explode if I didn't there when I just got started, but alas some of that drive has gone by the wayside as I try to get everything done in a day that I need to get done with a finite, and dwindling, amount of energy. C'est la vie. So now I don't focus constantly on whether or not my CCSVI procedure 'worked' or not. It's just realizing that while it may have helped a great deal, it didn't have the dramatic effect that it had on some. With almost 100% certainty, I can say that's because I'm a progressive case. The increase in some function I got was probably due to the fact that I was right there in the transition from relapsing to progressive when I had it done. Enough about that, it simply is what it is.

There are a couple of things I'm wrestling with right now. One is coming to the logical conclusion of where progression eventually leads you. Not just dealing with the nuts and bolts of having to adapt, but adapting to a mental state where I know what's coming, but not being interested in the slightest in dwelling on it. To coin a phrase I've used a lot in dealing with the mental strain of it, it serves no purpose. The other is trying to figure out what I'm going to attempt to do to try and be satisfied and content with the hand I've been dealt. That's a tricky fucker right there. I still, absolutely, like and want all the things I used to like in the past that gave me pleasure and satisfaction. It's just that I can hardly eek out any of them anymore. Was that because I lived too far in the physical world? I don't' think so even though I focused on that alot; it fed my soul the way reading does some people I guess. I think it's because our bodies and minds are one and when one is compromised, it profoundly affects the other. There's no question about the validity of that statement, but sometimes it sure seems like there's a separation, even if that's just a construct of academia. Well since you can't have one without the other in a living being, I just have to accept that you can't have a fully charged, unaffected by the physical, mental life when dealing with something like this. It just doesn't work that way.

So in dealing with number one, I've been getting fatigued badly before the day is done. Boo hoo I know when compared to many of my contemporaries that have crippling fatigue by 10am. But it is new to me. Not working has allowed me to be somewhat functional in terms of being a domestic engineer. I could get things like the laundry done during the day and cook dinner when my wife gets home from work. Granted those two things sometimes took all day to accomplish, but now I can hardly eat with out being nauseously dizzy after I cook. Or I can't clean the kitchen up and have to leave it for the morning. These are almost laughable to be upset about as I write them. But you have to understand it wasn't that long ago I was working 10 hours and then coming home and cooking dinner and interacting with the fam and all that and going to bed around 10:30. It just freakin' hurts so bad now I can't even physically get some things done as my legs just won't go another step. So what I talked about in the opening is the conclusion you come to when you think about it. I'm talking about becoming non ambulatory. Yes I am still on my feet and I still can do short trips to the store, go to the movies and things like that and for that I am VERY grateful considering I've had MS for 10 years now. But when you think where you were 5 years ago, where you are now, and what it will more than likely be like if I progress the next 5 like I have the last 5, that's when you can get scared.

No one wants to go into a wheelchair. And I'm really not scared of just that anymore. I used to be, but as I always say, the only 'good' thing about this disease is that it usually gives you plenty of time to prepare for stuff like that to happen; at least in my case. It's all the other shit that comes with it. We have regular cars. We have a regular house that's on the smallish side. We don't live in a plat with a flat yard. We don't have stair lifts. I still 100% take care of myself. All that shit will change, as some are all too aware, when you sit down for good. So all of the sudden you start to worry about money and all of that. But it really does screw up what good might happen today if you dwell on what may come. You see I really don't know if that's the inevitable conclusion of this. I've heard that over time MS can slow down. So maybe I will stay on my feet. I sure as hell won't be able to do many trips up and down the stairs if much more happens, but you stay upright as long as you can to be sure. So I'm reaching the same conclusion I ALWAYS reach in terms of progression. You just have to live one day at a time. Cliche I know but it's a cliche for a reason. And I'm am capable of living that way; MS has surely taught me that. But our fail safe motto is "prepare for the worst and hope for the best". Those are truly words to live by but I don't even want to prepare for that! But I have to and I have to find out what my options are if it happens. Not to dwell on, but just so it becomes an intellectual issue I'm prepared for if it happens and not an emotional one.

So, yes, my inevitable conclusion is that I am losing function in terms of endurance, energy and leg strength and may end up in a wheelchair. Those nerves just aren't firing fully and that's what it takes to keep your muscle mass up. No two ways about it really. When your legs have had enough by about noon, you know things are happening. But it is different than before when you'd have an attack and lose a bunch of function in a hurry. This is soooo different. Just a slow descent and you actually wax and wane and lose strength and build some back. But those are really games I play with myself. I get lazy in my exercise regimen and then get back into it and have a small bounce in function. Those are good things and even though the net effect is still loss, living a day at a time allows you to feel victorious even though it's just a head game. It is SO hard to stay motivated to exercise when you have to do it way past the point of pain just to get any benefit. And this is from a guy that would run on Xmas day in a blizzard when I was healthy. But throw in lots of pain and it's different. But I won't give up. It's hard to fight when you know you're not going to win. There's no getting past MS, there's no 'over it', there's no winning. At least not once you start to progress progressively :-). So the motivation that most sick people use, getting better and getting back to what you were, does not apply here. You have to really want to enjoy the diminished function that you are capable of having to even do it I suppose. It's a strange, unique dynamic and I've often verbalized it on here. I think I refer to it as 'exercising so things suck less'. Hard to stay motivated with that mind set year after year after year.

On to the tough one I'm dealing with. Not just what to do with yourself, but what life has to offer in terms of creating a new life for myself in this condition. The hard thing is that I still want and desire everything I always have. But, to be frank, most of that is out of reach. And it's not just the sports and that type of stuff. I mean yes I'm aging, but those who know me know that I was the middle aged guy that could 'hang with the young punks' in all things physical and even show them up. I've literally always been in great shape and would wake board all day long even when I was 5 years into this all and would stop only when I had to pee! But that really doesn't matter and only makes it harder to get over. I've always talked about the dangers of lamenting the past, but that's not where I'm at right now. I need to figure out what in life is going to interest me enough to where I WANT to get up in the morning and get started on it. Writing comes to mind, but shit, I just don't know how to get started. My friend in Washington, Mark who has already sat down, cooks and I simply love looking on Facebook at what he is going to make for dinner! He seems to really enjoy it and I suppose I could start that as a hobby. But really it just hurts to stand long enough to actually do some really cooking. I guess I'll have to use my Dr. stool and scoot around the kitchen.

I don't know, this post seems to have fizzled out as I'm writing it in terms of how much of my thoughts it has taken over. It sure feels a lot more 'grand' than it's coming across. But it is important, if you don't want to fall into the depression trap, to find something that trips your trigger. It just doesn't cut it just reading and watching TV and turning mushy. I don't hardly even turn the TV on during the day unless there is some good sport on. You'd think it would be easy to get over things you want to do that you can't anymore. It's kind of simple, you can't do it so get over it! But it's hard as the shows you watch, the people you're with, all do the things you want to do so since it's not an option to just check out of life, you just have to find your thing. So it sounds like I'm going to try cooking on for size. I've been learning, but not refining the craft whatsoever!

So the purpose of this blog remains the same. It allows me to verbalize what I internalize. It gets it out and shines a light on it and thus (in my mind anyway!) must be put into action. That's the approach anyone who deals with anything should try on for size. You can go to therapy all day long. You can psychoanalyze with a therapist until you're blue in the face. But until everyone knows about it and gets used to it (whatever it is) or doesn't, it's still there. I've come to the conclusion that, once again in my case anyway, I can't get over it until it's out in the open. Therapists are great for throwing you a lifeline I think, but to me, there's no substitute for just getting it out, hashing it out amongst friends and laughing about it later. That oh so socially profound movie Crocodile Dundee had a great line in it that says what I'm trying to say best. When trying to be sensitive to someone dealing with an issue the girl tells him she's seeing a shrink. He responds by saying "I didn't know she was nuts" to which his love interest in the movie explains how she's just working through some issues, to which he replies "hasn't she got any mates?". That's what it's like for me. If you're ashamed of a problem and you feel like you can only tell your therapist, it's still in the closet. You tell your friends and you've opened up. When it's still a secret, it's still a secret. And secrets are sources of shame if you dare not speak of them. But when you shine a light on them it usually turns out that most people thought it was no big deal anyway. And if they're appalled at whatever it was and simply can't be your friend anymore? Well then that's really how it should be since you don't want your friendship to be so fragile that if they knew this one thing about you they'd abandon you. So Lew's school of therapy says shine a light on the issue and it will either go away or diminish; it can't hurt you anymore once everyone knows!

Since I feel like I'm rambling, I'm going to close this post off. In the never ending pursuit of happiness that I'm on, I found a quote from that socially relevant giant, Charlie Chaplin. "To truly laugh, you must be able to take your pain and play with it". In other words, we all need to do a little bit of getting over ourselves.

Thursday, June 23, 2011

New title and direction

As you can tell from the non-bloviated, new title, things are changing up in here. One thing that is happening is that I am not able to read like I used to be able to. Why is that you ask? Well it's because as soon as I start to get into a paragraph or sentence, something pops in my head that I just need to capture. A fungent thought, a quote, just about anything. I suppose, it's highly likely given my hyper nature that it could be ADD, but I never suffered from that before. No sports fans, I think it's because I'm becoming a writer! Hoo dee hoo! It's hard for me to say that in that fashion. I don't want to come off haughty or 'better than you' type of thing. Our society, at least the one I grew up in, rewards humility in a big way. So I've always been careful to not portray myself as thinking too much of myself. And writing down my own thoughts for others to read, in my mind, comes off a bit egomaniacal; like what makes me think people give a shit what I have to say? However, I think I'm wrong about that. Are all writers egomaniacs? I suppose it could be true, but I doubt it. So now the urge to write has become a distracting force that keeps me from enjoying my reading, and that pisses me off. So here I am.

Why the sudden uncontrollableness of it all (I'm now a writer so I'm allowed to make up words)? I've no idea except maybe being retired allows me to pontificate on life whereas my entire thought processes before were about work. And believe me, I wrote PLENTY at work, just ask anyone that used to work with me. That's pretty fucking stupid when you think about it once you really think about your one life you have to live and what it ultimately 'means'. But that's how I lived it and I was very successful professionally, so I'm going to do the same here. Maybe it won't manifest itself financially, but I'll feel good about it and that makes it a successful venture!

So I'm trying to read the autobiography of Mark Twain, who should really be everyone's literary idol if you ask me, and I can't get the monkeys out of my head. He was probably the man I'd most like to have been able to spend time with. Never have anyone's quotes affected me like his and I think we are somewhat like minded. He didn't allow (whatever that means) his biography to be published until 100 years post mortem so he could tell it like it is and speak his "whole frank mind". So even the famously politically incorrect Samuel Clemens worried about political correctness to a point. But I think I will differ from that. I am really at the point where I don't much care if what I say pisses off this group or that. In this politically polarized time we live in, simply opening your mouth is enough to piss off this group or that. It's crazy and I hate it. We used to be a country of equal opportunity offenders. I mean no ones' ethnicity, handicap, whatever, was off limits and we all made fun of everything leaving no one offended save the weak minded or very sensitive. And didn't that used to be the whole purpose of teasing those who couldn't stand it? To make them 'toughen up'? Now we don't dare offend anyone because the thin skinned are now making policy. Someone please give me a big, fat, fargin' break. We've lost a LOT of great thought in order to not offend. And since when did the 1% dictate how it was going to be for the rest of us? It's happening now.

I mean I listen to teachers talk about all the mainstreaming that is now mandatory in our schools. I'm for everyone feeling 'normal', hell I deal with that shit every day being handicapped. But to force a child into a classroom that totally disrupts class constantly, due to whatever issue they may have, can be so detrimental to everyone else. Let's say I'm a teacher in a class of 30. I have 4 students that MUST be mainstreamed from the lame, ass No Child Left Behind act. So one of the students is an absolute constant disruption. So now that 3% of that population makes it impossible for the other 97% to learn because the poor teacher has to spend all their time with that one student since the aid doesn't work there anymore due to budget cuts. I ask one simple question; what is wrong with giving that child the focused attention he obviously needs? Where I come from, we call that the tail wagging the dog. To me it is more important, in the setting of school mind you, for learning to be paramount and political correctness be whatever the opposite of paramount is. So let's make 29 children NOT learn so we can satisfy EVERYBODY. Guess what? That's not how the world works. More benefit for all involved in that made up scenario would be gained by focusing on the special needs child in a special needs setting; not jamming him in with everyone else; and who says he even wants that? Newsflash-people are different. I mean if a childs' tourettes is so bad that they scream the whole time they are awake (I saw an example of this on discovery), the NCLB act says 'mainstream 'em'. Who does that really serve? Certainly not the child with the issue, and certainly not the rest of the class. Who does that leave? No one. So it serves not one, single person in that group, but it makes someone in Washington feel better about themselves.

Political ideology in this country is so screwed up it's not even funny. To listen to the news, you are either liberal or conservative. Guess what? In terms of idealogues, that's about .1% of the general population. So who do you go with? I don't believe in charging on a credit card whose limit has been exceeded a thousand fold. I guess that makes me a conservative. But I also believe in a woman's right to choose and I also believe being gay is not a lifestyle choice. I guess that makes me a liberal. Like most of us, I'm neither. Are you telling me I have to be a religious zealot to want to control spending? (disclaimer: Bush started the shopping spree and Obama put a turbo charger on it, so they're both dicks in my eyes so don't think I'm in either corner). I'm a fiscally conservative social liberal. I mean are gays getting married really going to affect me and my family? Do any of you honestly think that people CHOOSE to be gay? I mean what 12 year old kid says "I'm going to make the lifestyle choice that makes me get the shit kicked out of me on a regular basis"? Because face it, kids are NOT politically correct and most of them still make fun of gay kids; it is what it is and I'm just bringing it up. Another newsflash; bullying will always be there. It used to be the parents job to deal with it; it was a teaching moment. The government solving bullying? Really?

BUT, I really, really don't think we should fire up the dollar bill printing presses. So why in the hell do I have to choose between two political parties that have diametricallly opposed ideals? Because we've put extremists of both parties in office that's why. And consequently, common sense has gone out the window. Just for a day, retire like me and watch C-Span for a couple of hours. It will make you want to throw up in your mouth to watch these guys who supposedly represent us go at it. You wonder where they are coming from since neither one of them can say what's really on their mind. I think that's why so many of us are so disgruntled with all of them. I mean really, can you listen to Nancy Pelosi wax eloquent and not think she is nuts? And on the same note, try listening to Mitch McConnel; same thing. And the shame of it all is that they are both smart as whips. But peek behind the curtain at their business dealings (you know the ones that make our "peoples' representatives" gozillionnaires just like US?) and you see that they are both complete hypocrites.

And then there's the press. Please. There were literally teams of people pouring over crazy ass mama grizzlie's emails that were released in the last few days or weeks. They even recruited 'citizen journalists' to read them all. Where was THAT shit when the health care bill came along? Were there dozens of them pouring over that to tell us what it was about? No. Did they recruit readers to read that monster so we'd really know what it was all about? No. But the day Palin's emails go public, it was on! And the sad thing is, the health care bill was about 10% of the content that her 25,000 emails were; pathetic. Who gives a damn about what miss irrelevant was writing two years ago anyway? How did it come to this? The bottom line for me is this: neither political partys' ideals fit up with the vast majority of us. Maybe their published ideals meet what we want, but their actions are really the only thing that matter and they just want the headlines to look good, I don't feel like they are really interested in exacting the change that their constituents actually desire.

So my political screed for the day is out of the way. I thought it important, if you are going to read this of course, if you know where I'm coming from. Just like most people, I think we should throw all of the bums out. I mean really, as a percentage of the congress and Senate, they have, wait for it, a 1500% higher rate of being under active investigation. Narcissism has its' pitfalls and most of them are narcissistic to be sure.

Aside from, or because of I haven't decided, my MS I feel very much like the everyman. I'm really tired of writing about just my MS. I'm quite sure it will still be a theme to what I write, but I just don't have all that much to say and I was enjoying more writing about how I deal with it to stay engaged in life vs. analyzing my procedure and if it "worked" or not. The answer to that is this: it was the best thing I ever did for my MS bar none. Nothing gave me more functional improvement in one fell swoop than that did, but it doesn't take you back to who you want to be. For some it really seems to and I'm still jealous as hell of all of them, but as is the norm, that's not what I got! As you continue to research your MS you will think you have Lyme disease, Epstein-Barr infection, Cpn infection, diabetes, rampant herpes, and a whole myriad of other things. The bottom line is they really don't know WHAT the hell is wrong with most of us since they don't really know what MS is. How can you know what it is when you have no clue what causes it? We know what Central Nervous System lesions do, but that's easy; just wait, watch and tabulate. And to take a drug that even the Dr's say they don't know how it works, or if it works? Not this kid. Strangely enough, I feel WAY better than I did while on those stupid, ineffective drugs. It's an easy question to answer for most of us whether or not we'd even take a drug whose efficacy was unknown and whose mechanism of action is unknown. Yet millions shoot this stuff up all the time because there's no other alternative. Well guess what? If they don't know what it is, there's a real possibility there isn't a drug to do the trick. But in this society? There just has to be a pill, doesn't there? So they came up with SOMETHING we can shoot up. A show of hands please who the drug has worked for who is CERTAIN they are not just in remission? Some will raise their hands, but some need to feel like it's working. And all over the labels and in all the literature they tell you it's all ineffective against progressive types of MS, yet I'd bet well over 50% of progressive patients shoot it up anyway despite it doing nothing because of the way we have to have a drug for everything.

I have a feeling as I'm muddling through Mark Twain's auto B that I'll be writing alot. I sure hope so!

Wednesday, May 11, 2011

The dangers of lamenting the past

Oh great, I just hit some combination of buttons with butter fingers and just erased about 5 paragraphs! Shit. Oh well, I'm retired, I'll just start over. Anyone that reads this blog knows how I'm uber diligent about trying to make sure I don't fall into any of the mental and emotional traps that having MS puts in front of you. And since writing it down is so cathartic for me, I'm going to talk about it! As some of you also know, I was the 40 something guy in REALLY good shape. I had never really let myself get out of shape since high school wrestling actually. And once I got diagnosed, I went into overdrive with it with the running and working out. So with that frame of reference comes some good energy. I was always the guy who'd do the physical task that needed to be done. If it was play with the kids while everyone else relaxed; I did it. If it was mow the lawn and work in the yard day, I'd do that to; after 6 or 7 miles of course! So BFD, what's that mean now? Well it means I still have a hard time just watching people just BE. Just standing in the sun, or walking around at an outdoor festival or whatever. It makes me jealous, and we can't have that. It serves no purpose. Actually it does, but it's not a good purpose.

So I'm sitting at mass Sunday morning and I feel that pang of envy just watching other dads messing with the kiddos in the back of church as they got ready for their first communion. Yes, I'm catholic. Me and God are cool. Me and religion on the other hand.... Suffice it so say that going to church saves me loads in tuition. I am not against it at all for sure, but I just struggle with church personally. If only there were a Native American church and school in Dayton! But I digress. I can get green with envy doing almost anything where there are people walking and not actually thinking "hey, this walking shit and me deciding when I'm done is awesome!".

So here's where I state the obvious, but like I said before, writing is so cathartic for me. No amount of lamenting and hand wringing and thinking about what I used to be able to do is going to do shit. I mean really, isn't that obvious? Well yes it is, but it doesn't keep your mind from going there. But it serves not one, single, solitary positive purpose. The only purpose is to slip you into thinking about what you can't do anymore. And since that 'anymore' is probably final with progressive MS, what freakin' good is that? Answer: no good at all. I mean if I'm going to be happy I have to be OK with where I'm at. Notice I didn't say I have to LIKE where I'm at. Pardon the french, but that would be fucking impossible. If you like MS, you are whacked. I hear those "it's the best thing that's ever happened to me, it puts my priorities in order" lines and just shake my head. Brother, you must have been pretty screwed up then. Well I wasn't. I loved my life. I was very vital and definitely squeezed life pretty hard.

But what's happening in the here and now IS my life. It's what I need to move forward from or I'm only moving backwards. It's not the life I'd choose, but I CAN'T DO ANYTHING ABOUT IT. It will require diligence, of that we can be certain. But I can't continue to look on able people with envy. It is 180 degrees opposed to me being happy now. And why can't I be happy now? The only person in control of that is me; I can be happy. But not if all I do is bemoan the past.

And in the grand scheme of things, it could be a hell of a lot worse. I can still do everything required to live a normal life. Now the definition of normal is where that gets fuzzy. But I can still walk, make my own food, clean and feed myself and I do have enough walking chops to go to the grocery for a short jaunt, or caulk four new windows (I did that yesterday :-)). No I can't go running. No I can't enter a racquetball tournament. No I can't sit out in 90 degree heat for an hour and be OK. But BFD, right? I mean the things that have been taken away are decidedly not things that are required to thrive. As a matter of fact, they probably defined me too much. I mean did it really matter that I could beat you in a foot race, or that I was ranked in racquetball in the state of Ohio? No it didn't. It sure seemed to at the time and I'd love to still be golfing and playing, but damn, I can still walk. It is so cliche to talk about getting back to 'the things that matter'. I hate that shit sometimes, but here I am in the middle of it now and I know what they are saying. It's true.

MS is a disease of almost constant re-calibration. NOT doing so is the destructive part. If you don't recalibrate from time to time with what you can do then all you are going to do is lament the past. And you read the title, right? HaHa! Seriously, I absolutely hate re-calibrating because all you're doing is resetting your frame of reference to constantly diminishing ability. But the alternative is sitting in the corner in the fetal position or taking anti-depressants. You all know I'm not that guy so I have to say good bye to Lew the wannabe athlete. I mean really, beating ass in racquetball never did make me a living, it just stroked my ego. Not that I didn't enjoy that, but it's not what makes you really happy because you lose that stuff with age too, but you never lose a good mindset. Not if you are into mental maintenance. Let's go Wings! Down 3-0 and forcing a game 7, they are GOING to win the cup damnit!

Friday, April 15, 2011

The end of my CCSVI journey...for now anyway

Where to start? I don't even know since I plan on summarizing many things in this post. As most of you who read this know, I just got back from Albany Medical Center to get a venogram. It was my suspicion, based on the low percentage of patients my original Dr. treated, that my azygous vein needed some work. That's the 'spine draining' vein. I had to get a doppler ultraound on Saturday the 9th, and then a venogram and angioplasty/stenting if the venogram showed blockage/lack of flow. Well as any self respecting CCSVI follower can attest to, you WANT them to find something that needs fixing. There has also been a huge amount of people who re-stenose and who get blockages in their stents that have been placed. Well it was a butter side down in the diaper pail kind of day; no problem with flow whatsoever! The Dr. actually told me that he had never seen existing stents in that good of shape in terms of free flow. Maybe it's the bigger stents I have, or maybe it's because of how much water I drink that has kept them so wide open and clear all this time. Well my azygous, which had never been ballooned or stented, was also 'just as he'd like to see it in a healthy person' is how he put it. So what now? Well it's back to life of just taking care of myself the best I can and eating right and exercising the most that I can. Basically what I've BEEN doing. So how does this make me feel about all of this?

Not any different at all to be truthful. It's good to know that whatever problems blocked jugulars were causing me has been taken care of. So why is my left leg having MS issues? Well there's obviously more to the MS story, especially for us progressive patients. I can vividly remember reading at the very beginning of my trek down this road that progressive patients at 18 months out pretty much didn't feel any different. I can't say that totally as I did experience some significant improvements after the procedure in June of '09. I STILL don't use my cane at all, and I've still not needed it. But there are no more improvements and my left leg has had MS progression over the last year. However, it is very, very slow (which is good) and to be honest nothing else has progressed since the initial procedure. That's ginormous as you all know that we all went in to this just hoping to stop progression. It is my feeling that the 'up from the chair' stories we all read about are exclusively Relapsing and Remitting MS patients. I mean progressive MS is not an inflammatory disease process anymore, so why would it peel back symptoms? The correct answer is that it wouldn't. CCSVI cannot undo nerve damage. Maybe nerve inflammation, but not actual nerve damage. C'mon stem cell therapy!

So I've had a 'clean running' CNS for about two years now and I've not gotten worse except in the area of my left leg. Could that be progression since the procedure? Obviously it is despite a 'flowing like a river' cerebro drainage system. I suppose there is a chance that this was started before my initial procedure and it's playing out, but I don't actually believe that. If it slows down and stops, then maybe I'll entertain that theory, but not until that happens. So once again we progressives are left holding the shit stick. Bt the results the RRMS community is having are still just great. I mean if this proves out and is picked up early, we could keep people from ever getting to the progressive stage. That is the secondary progressive stage. Those who are progressive from the start (Primary Progressive MS) are most likely still in the place they've been forever with no good treatment at the present time. There are things like immune ablation (rebooting your immune system with high dose chemo) that have had results for all MS'rs, but that's still not a tried and true method either. So despite a completely clean bill of health from the flow doctors, I am still about a 5 on the EDSS (Expanded Disability Severity Scale). Basically that says I still get around, but there are significant things wrong with functional systems and the like. I'm not bitter, pissed or any of the above. After ten years of this shite, you get a pretty high fallutin' 'hope for the best but prepare for the worst' mindset. But I think I did get the best in terms of having this procedure done. I mean the whole concept of CCSVI is cerebral venous insufficiency, and I obviously do NOT have that anymore. So I really had no expectations of 'getting better'. I've written on that extensively using my flooded drywall analogy. The waters have receded and I'm in need of a good drywall guy! Once again, c'mon stem cells or whatever is eventually developed to repair nerves.

So to me I got relief initially from those things that impeded blood flow was causing. I did not get relief from my big MS symptoms. So is this all about MS? Hell, I don't know. It's not about MY MS. It gave me relief, of that there is no doubt. But even though I'd have liked to seen blockage so that I could say "that's why my left leg is progressing!" alas I cannot. There is a HUGE movement out there that is just convinced that this is it; no doubt the debate is over. No matter how hard we want that to be true, it is not. There is much more to discover to correlate MS disability and CCSVI. There is a chance that it's not even really the same thing. But then again there's a possibility that RRMS and progressive MS is not the same thing.

So going forward, I'll not be blogging about CCSVI at all unless there is some breakthrough. I'll be blogging about how I deal with this and what I think about it all. I do know that my left leg is pretty much my only visible dysfunction; and it's not even visible all of the time; only after effort. But the whole left leg issue is NOT just that it's getting weak. I've always thought that just straight up weakness is what we should fear in terms of losing our mobility. If I were to get 'sat down' (knock on wood type lingo for needing a chair!) in the near future it would not be an issue of strength. It would be an issue of knee pain! I have a suspicion that my knee pain is due to spasticity caused by the MS because it's at it's worst when my calf is just screaming from that. I think it's probably pulling my knee joint apart and causing it to bang together with every step. So I'm going to an orthopedist to get another MRI. My left knee has been screwed up from sports my whole life and it also feels like that since it now hurts pretty bad when I'm just at rest. So we'll see. I can exercise, but I always hit a wall of knee pain way before I've given myself a workout of any significance. I also still get all dizzy when I exert myself so that quashes it too. So it's back to looking at stationary objects while shaking my head from side to side and shit like that to combat dizziness. Not fun, but what you gonnna do? As always I have my chin up and will enjoy my life. It's not the life I'd choose for myself since I was always such and uber busy person. But I'm getting used to it, as is my family, and I had a great day yesterday of training the dog, working in the yard; strenuous things like picking up sticks and other high effort work! I accepted the fact that I have this shit long ago. I won't let it have my spirit. That is not something that MS takes UNLESS YOU LET IT. That is important to keep in mind. No matter how bad we have it, it could be worse. We all need to remember that every day. Be grateful for what you have on a daily basis. I can walk. I can laugh. I can love. I can be an example for my daughter. Now what is it that leaves us in the dumps, incapable of enjoying our lives? Oh, that's right, ourselves! So look at your damn self in the mirror this morning. Then think about your kids, the sunshine outside, your spouse. Then ask yourself if a strong bench press or running ability will help you deal in those things any better than you can now. Things suck all over and things are beautiful all over. Let's concentrate on the beautiful things and screw the things that suck. No time for that shit anymore.

By the way, google blogger needs to jump up and bite my ass. I've went through here and had to reput my paragraph breaks in like 4 times. So I hit preview after literally hitting the return button 6 times between paragraphs and it still wipes them out. So this is probably going to look like one big, huge paragraph. No reason for i all all and I'm sorry it it's tedious to read. Whatever is doing it has done pissed me off and I'm not fixing it again! OK I couldn't live with that, hopefully they're in there now.

Monday, March 14, 2011

If you want to learn about CCSVI procedures....

Go here! This is an event in Chicago that some of my friends have set up and it will be very informative, but they need RSVP's soon so they know how many folks are coming!

So get off your butts and register!

Wednesday, March 2, 2011

Going back for Round 3

Well it's been a while since I updated on here. Things got busy for me personally for a while and I really didn't have much to talk about since I've been distracted. Getting the new puppy has been a blast and sobering all at the same time. She's adorable and a good girl (with lots of energy) but she is hard to run around after when you can't run! At any rate, I'm spending a little coin to have her trained pretty hard core since I just can't kneel down and take that much focused time to spend with her.

Well as lots of you know, I retired. I was major league stressed about getting approved for disability also. I had actually been told it may take up to 18 months to get my first REJECTION! Well I got approved in only 3 months! I guess it's because there really wasn't any question that it was time. I pushed it past the point of sense to retirement that's for sure. But at any rate that is major stress off my mind since I went from full salary to nothing the day I retired. So the amount of boxes I have to check before I relax is becoming smaller and smaller. That's a good thing! Plus baseball is getting ready to start and since I feel 70 years old anyway, I may as well act the part and listen to the transistor radio all damn day. I do love listening to the Cincinnati Reds on the radio. It's good stuff.

So now what? As most of you also know, I am getting weaker and weaker in my left leg. So much so that it's starting to not want to work by, oh, 10:00am! I mean I can get around, but I do one thing and it's take a protracted rest before I can do much else. Thus the sobering part of raising the puppy. But it's worth it, we are fast becoming inseparable. She is such a little lover. She sleeps a lot and won't sleep unless she's in the same room as me; usually with her head rested on my feet or something. I'm really bonding with this dog and it's all due to how awesome my last dog was. She taught me what pets are really about. Too bad I had to learn to be patient and understanding ON her, but she didn't mind, she was the best. I'm fast becoming that weird person who talks about their damn dog all the time. I guess there could be worse things! I'm just home all day long with her and she really is becoming very important to me.

So what's the title of this post all about? Well as readers of this blog know, I have it in the back of my mind that we missed what I think to be is the main culprit of what's going on; my azygous vein that drains off my spine. I just didn't feel like I could leave this effort feeling like we may have overlooked something. Not really overlooked, but didn't know what was what yet. The guy who did me just didn't 'find' nearly the percentage of dysfunction in patient's azygous veins as 'other guys' who will be doing mine have. Not even close.

And since my disability comes from things going on in my spine, I'd just have felt like we'd have left too many cards on the table. So as I was in the middle of writing this post, I got scheduled in to have this done! Hootie Hoo! I feel weird about this one though. I'm not nearly as hopeful that this is going to fix what ails me since the first round really didn't. Well I improved, but I'm back to going downhill slowly but surely, at least in my legs. And that's getting tough. I just don't have enough strength to get through the day anymore without significant amounts of downtime. I'm still walking, just not far at all now. I used to say, just not very far. Well this is a whole new level of that. By 10:00am, I'm ready to take a 2 hour nap to recharge my leg batteries. It sucks, but as I've always said, I have MS, this is what happens when you have MS. This is the disease process, so I can't go all batshit and get all let down if this next round doesn't 'cure' me.

So this next round is so I can close the book on this if you will. It always nagged at me that we didn't do anything to my azygous vein. Well we might not again. Dr. Dake may have had it all right. However, he had not seen that many patients to that point and these guys who are doing me in early April have seen well into the hundreds of cases. I may never close it all the way as there may be tuning required, but I just feel like I have to finish the race I started and I just don't feel it yet. It's possible that I'm just crazy jealous of the stories I read on Facebook about people having MAJOR improvements. And also ones you can turn on and off by restenosing and then fixing the restenoses. It was never like that with me. I never had it come on and felt like it was a discreet enough event to even notice that something was wrong that needed 'fixing'.

So I wait a month now. I just hope the progression doesn't keep up like it's been in my legs. They are truly getting weak and I wonder how many more days I have left where I still accomplish basically what I wanted to when I woke up. Granted that list has been scaled WAY back over ten years of losing function, but I got used to staying the same for so long. I started to have 'disability memory' where the level of my function was getting in tune with the level of what I wanted to do. That may not translate very well, but it's like this. You want to do X, but you only get Y done and you get all bummed out since you could do Y just a week prior. Well staying the same for so long allowed me to understand what I could do and it started to be innate if you will.

Oh well, I have to tend to Lilly Belle. I haven't had to clean up a single accident today (knock on wood) and that's pretty good for just shy of 12 weeks old! Stay tuned for results of my procedure! Hopefully my lazy butt will make one more post before then.