Saturday, August 21, 2010

Life and the changing attitude of this blog

I created this blog about 14 months ago to track my progress through the CCSVI procedure, sometimes called the liberation procedure. It has become completely evident that the 'rush' of things to be on high alert for after the procedure, things like improved heat intolerance, improved walking, etc., has been relegated to simply monitoring myself for myself's sake. The shine is off the procedure, I've been given my gold star at my one year check up, and my jugulars are flowing freely as they are held wide open by stents. So what happens from here is not only going to be very gradual, but also simply the consequence of me living my life. In other words, the treatment/procedure I had done is not 'active' anymore like it was at the beginning when I was really noticing some profound improvements. I mean I put my cane away, how huge is that? I still don't need it by the way. And there are those things where I've not noticed much change at all. But, even though I don't have proof of anything, I'm doing much better than had I simply just continued to take the complete shite MS drugs. To me anyway, it's a fact. No one knows what's going on with themselves like someone with an incurable disease. You're on high alert all the time to make sure medical intervention is not necessary and things like that. so call it psychosomatic, call it actual healing, I don't give a shit which, all I know is I can do so much more than before and that was the ENTIRE goal of doing this untested procedure. So it's time to turn the page.

But turn it to what? The answer is living life. I'm not cured in that there are still issues in my leg strength that will always be there until something like stem cell based repair comes along. Until that/if that ever happens, I will be living life with my deficits. My deficits are still very detrimental to living a 'normal' life. By that I mean a life that is not consumed by "where the hell is the bathroom?", and "I can't walk that far", and "I can't carry that", and "I can only do so much", and "I can't drink any liquids past 8:00pm", and the list goes on. I'm not whining. After dealing with those things for so long you adapt and it becomes part of your approach to life. It has to be unless you just want to get desperate every single day because you can't do everything. Some people actually do that. Very self defeating, but people still do it nevertheless. But I still need to write. It's my personal, cathartic activity that allows me to organize and capture 'where I'm at' and record it to look back upon as fleeting thoughts that come and go need to be captured. So how I live my life dealing with the stuff I deal with and pursuing happiness is what I must change the nature of this blog too. It fascinates me how differently people thrust into the same circumstances can have such widely varied approaches with how to move forward, or move backward, which is what many do.

I can't be one of those guys as many of you who read this know about me. I refuse to let this consume me. Now that is a very bold statement to make, and probably comes across very naive/pompous to someone who has this disease who is in a nursing home. I'm not there right now, and hope to never be, so here is where I am and that is part of my attitude. I can't 'beat' this like people who you see battling cancer. I admire the hell out of those folks and actually envy them sometimes. It's something you CAN fight. You don't always win, but there is an endgame. With this there's not, so the only way to fight is do all you can, like have the procedure done. So since I can't beat it, I have to learn how to live with it. AND I have to learn, or attempt to, thrive with it. Reading works like "Mans' Search for Meaning" by Victor Frankl and works like that are what makes me think it's possible for people to thrive under any conditions. And when I mean thrive, I simply mean have peace of mind. By the way, if you haven't read that oh so short book, you are doing yourself a disservice. It's not about health issues and is, I think anyway, one of the most profound modern texts. I read it in a day; it's that short, so read it!

So I have really been struggling with what to post that's for sure. I mean things simply aren't changing that much so I would just be taking up blog space expounding on "things are the same" every week or so. I got some inspiration from a very strange source. A man named Christopher Hitchens. Those of you who read current events, know of Hitch. He is a firebrand essayist that can only be described as a devout atheist. He has an acerbic tongue and generally just pisses people off with his writings, but he always makes you think. He fancies himself a modern day Hemingway for sure with his ever present lit cigarette and confrontational, unapologetic attitude. He has advanced, and probably, terminal cancer. He is obviously spending time writing about that. His thoughts hit me hard because it seems that no matter where you are coming from, people in similar situations have thoughts that seem to meet at the same point. He is attempting to describe his "deportation" to the land of the sick/gravely sick. Those of you dealing with something know exactly what he's talking about. It really hit me that statement. It's very frustrating to watch the world continue to go by at a pace you just can't keep up with. But at the same time, you know the world shouldn't slow down to your pace either. So it's very scary to watch your loved ones continue to do the things that you wish you could and not begrudge it at all. It is so scary as you definitely feel like you're going to be left behind. And then you're abandonment fears set in, and then it starts to affect your self esteem. It's a vicious circle that is extremely hard to figure out how to get out of.

I mean after all we are all obviously at least half 'physical' and it's also obviously how we present ourselves to the world. You didn't go after your spouse upon first laying eyes upon her in the context of "I bet she has a great personality". You went after her physical body and then learned to love her personality, or left because of her personality. So the physical gets you in the door and then personality takes over. It's just the way it is. I mean after all, aren't we all the cum sum of our accomplishments and our decisions? We simply can't separate the two and just be physical or just be mental/spiritual/emotional now can we? Think about it. My disabled idol, Christopher Reeve, still presented himself to the world as a quadriplegic. To me, that's when he became Superman. With his positive attitude while sitting in that chair able to only move his eyes. So that's what I mean when I say that people in the same circumstances handle it so differently. I mean there are many more bitter people who are quads than Chris Reeveses. But there are also plenty of people like him. My buddy Mitch (http://enjoyingtheride.com/) has a great attitude. He's also one of my idols whether he knows it or not just by being Mitch.

So how do they do it? I aim to figure it out. It probably won't work quite that way. I'll probably just get there by going on the journey. It's so difficult. I NEED my wife to desire me even though I may become, in my eyes anyway, undesirable. How do I keep myself "relevant"? How do I not succumb to just getting by and making it everyday when it's so hard to do anything else? I just have to and this blog will become my sounding board as I try to figure it out. I mean that's what we are ALL trying to figure out, but it's more important to me now than it was when I had my health. I probably needed to pay more attention, but things like career and stuff were the distractions. I can't do that now. I mean I'm living LIFE, not living CAREER, so life comes first. I'm done cancelling physical therapy appointments because of work. I mean if there's a major deadline and I have to push one out, then so be it, but I was bad with a capital B with stuff like that to this point. Just regular work stuff came first and I was always cancelling, and in some cases not even getting started on, things I need to be doing to stay healthy in mind and body. Then I realized that the reason that it was always me doing the cancelling was because others' weren't. I'm not carrying all the load anymore. I guess I'm becoming more selfish with my time, but I sacrificed my own desires for long enough; it's someone elses' turn.

I really look forward to pontificating on here and going on a journey to figure out how to capture some of the old Lew optimism that made me such a content person before all of this. I really did have it dicked and I can again, I just have to undergo radical transformations in to what makes me happy and what establishes my self worth. I mean I'm still raising a teenager and I have a relevant job there. So maybe what it's going to take is to turn my eyeballs 180 degrees and look outward more and help people to the best of my limited ability. Sounds like a good place to start because the happiest and most content people I know are also the most selfless. I also love quotes and want to end this ramble with one about raising children. I'm trying to figure out how to make my daughter feel very convicted about following HER dreams. I ended up following others' expectations and it resulted in career success because of my work ethic, but I never enjoyed it, and still don't for that matter. I want her to be her own wheel, not just a cog in one. So our old president Harry Truman had this to say: "I have found the best way to give advice to your children is to find out what they want and then advise them to do it". I was advised to do what the conventional wisdom was at the time with no regard to what I wanted, so we'll see how that works out for my kid!

So it's time to turn the page somewhat. I am so utterly sick and fucking tired of constantly thinking about 'how I feel' and monitoring everything that goes on with my body that I could scream. So in order to get out of that feedback loop, I need to change something since nothing changes by itself. So writing in a different vane will hopefully get out of my MS obsession. I have MS, I don't need to let it define me. I need to take a step back and figure out what is going to define me going forward. Just being "the sick guy" didn't really work out that damn well.

Tuesday, August 17, 2010

Yes, I'm still alive and doing fine

I looked at the date of my last post and realized it's been longer than I thought since my last post. Well Stanford is starting their trial and nothing has happened as far as my case is concerned. Dr. Dake has passed my images around the CCSVI community, and everyone thinks it's a pretty benign thing what is going on in my sub clavean; coupled with the fact that I had good flow there on the venogram. So I'm probably not taking any interventional type steps for quite some time unless I really start going downhill.

My knee still hurts like crazy, but I'm going to physical therapy and we think we can strengthen it and help in that. My only thing I'm going to talk about is Ampyra. I took myself off of it after six weeks. I do think that it helps a little with spasticity, but it wasn't that noticeable. I did it for a couple of weeks longer than people who swear by it say you need for it to 'kick in'. The main reason I stopped is the aggravation it did to my constipation (I'm a poet and didn't even know it). I swear, every MS drug available causes constipation. From oxybutinin to this Ampyra, and I just wasn't getting that noticeable of results. So I'm off of that and am still doing just fine.

I'm handling a great deal of stress at work and have even worked a few ten hour days where I had to be on my feet when it was blisteringly hot and humid out. I did go down in function, BUT I was sweating profusely (a good thing) and my radiator was working well as I managed to hang all day. These things are great tests of what the procedure has done for me. I couldn't hang standing in the factory when it was 50 degrees out before all of this, let alone a heat index over 100. Not only did I hang all day, I did it for three days. So what I'm still dealing with is just 'having MS'. I seem to say every post that "I'm still walking and working". Well the different 'shades of gray' that have been really all I describe are starting to just seem like the ups and downs of life. I mean my CNS has been damaged. I can't say with any kind of definity (I hope that's a word!) that I'm progressing or not. All I know is that when I look back, I seem to be doing very well compared to where I was at before this procedure. And frankly, wasn't that the whole point?

So I'm at work and have to keep this brief as my break is about over. I'll post more, but I wanted you all to hear MY take on Ampyra and also to let you know that my postings seem to be more spread out because life is getting in the way. That could be the most positive statement about CCSVI and the procedure I've ever made.