Friday, December 24, 2010

Merry Christmas everyone

Well I've certainly done a crappy job of keeping this blog up. Life has most assuredly gotten in the way and I have spent lots of time 'finding myself' in my retirement. I've also got a bit lost in the holidays in that it takes lots of energy to keep the house picked up and my new job of being house person. Extra effort for having people over and the like as well as just struggling with how much, and what, I want to write about. I love to write and it is so cathartic for me that I'll never stop that's for sure. It is just a case of having other things to do and not having an abundance of excess energy. My limited energy was used for work and life. Now work is too much so it's now just life and I am simply worn out at the end of the day when I used to blog. Thank God this isn't a job keeping this up or I'd have been sacked for sure.

We also just lost our baby doggy Pooka. She was 13 years old but will always be our baby. She was literally the best dog I ever met. Even dogs that I knew that were uber trained and uber obedient. She was the kindest 'being' I've ever known and didn't have a mean bone in her body. She was our CONSTANT companion. Everywhere we went we took our Pooka. She never missed a single thing we did except for one time when we boarded her to go to Florida for a week. And when we got back the staff at the kennel were upset that she had to go. Literally everone loved that dog. We'd be camping and the dogs were supposed to be tied up. Not Pooka. She didn't know her boundaries at camping, but nevertheless she would never wander off. She just KNEW stuff. We never even trained her per se. I remember wanting to train her to sit. I had gotten some treats out to prepare to start training her. It took one treat. No shit. And she never forgot it. Shaking was something she would just do when you held your hand out. And she always came when you called her although we never, ever trained her to come. Once again, she just knew.

And my MS? Other dogs would crowd me and get too close and get their toes stepped on. Again, she just knew and gave me wide berth. She picked up on things and was so special. She slept on my daughter's bed since my daughter was 2. She didn't make a peep and would only let out a single 'woof' when someone came to the door. She was the perfect pet and became our very good friend. We miss her terribly. There will never be another Pooka but we know that, the bar she set is too high. But that also made it so we will always have a dog. She spoiled us. but some time has to pass until we think of her and don't cry but laugh about the good times instead. She was just so good people would just be amazed. They'd be around her for a little while and everyone would say "man that is a good dog".

I could carry on forever about her virtues. I've attached a picture of Pooka defined. Even when she was a puppy she was very gentle. My daughter, at two years old, was typical in that she would get her face too close, or squeeze the puppy too hard or whatever. But most puppies would scratch and bite as they were playing and little kids always get 'hurt' by puppies. Whethey they get nipped with their needle teeth when they are just playing, or jumped on and knocked over or whatever. Not Pooka. This pic says it all. She was SO gentle with Sarah. This is the day we brought her home. At 8 weeks puppies are just out of control. Pooka was just the gentlest soul I've ever known and she was simply the best. The other picture shows how patient and tolerant she was. Sarah is an only child (well her brother is 15 years older than her so it counts) and she always used Pooka when she played as her playmate when friends weren't over. Here she is carrying Sarah's arrows around. She would put capes on her, bundles of arrows, all kinds of stuff. And Pooka would just tolerate it. I'll miss her so much.


Don't mind the dates on the pictures. These are pics I took of actual photographs!





Wednesday, December 1, 2010

Neurorehab takes its' toll!

Since I'm now over the full on analyzation of what having the 'liberation procedure' done is going to achieve, it's time to turn the page. Having the procedure done I have found is not something that keeps changing. Once the initial improvements were realized, that's pretty much it for me I'm afraid. And as I've said before, now it's on me if there will be any more improvements in the way I function and my quality of life. So enter the Kettering Neurorehab and Balance Center. Going to this type of therapy has been wonderful and heartbreaking all at the same time. Wonderful in that there are things they have me doing that actually impact my QOL positively, but heartbreaking in that doing vestibular exercises and some of the rehab puts a marker on how far my central nervous system has deteriorated. And don't kid yourself, your CNS controls everything. I mean everything. We all have our own hard drive and MS messes with that. So it really sucks when something is screwing with it. I can't just reformat it, although that approach has been tried (google - revimmune).

Exciting things like standing in a stationary position with one foot in front of the other and staring at an object on the wall are just some of the stuff that I'm doing. It really makes you realize how far things have gone awry when you can't even do that without falling over. But the rehab of my vestibular systems is what's going to hopefully help me be less dizzy and have better balance. My big muscles are still strong. We did strength and endurance testing and I'm still in the 70th percentile compared to healthy controls on things like a 4 minute walk and things like that. So that's heartening. But it's awful disheartening to not be able to stay on your feet when your feet are together. It just is what it is to be cliche.

But the good thing about all of this stuff is that it is allowing me to work on what I really need to work on to keep functioning. My old self just wants to push out reps on the Bowflex and have that be a panacea for what ails me. But that doesn't get it anymore. I need to attempt to work on those parts of my brain that aren't allowing things like balance and stability to work right. It's hard to be able to bench what I pretty much always have, but not be able to do leg lifts. To be able to hamstring curl a normal amount of weight, but not be able to walk a straight line. No pain no gain still applies, but it's not simply a matter of just working to exhaustion like it used to be. That is detrimental now anyway. So I'm doing things like laying on my side and lifting my leg off the floor about 2 feet for a five count because my hip muscles somehow have about disappeared. Things like standing with a hand on a chair and lifting my leg up until my knee is bent at a 90 degree angle. Dr. Lew simply does not have the answers to make his body right anymore. Until I went to this place, I had no idea that my quads were just peachy, but my hip flexors have all but gone away. So all the things that can fix whatever ails a body coming from a healthy place are what I'm good at. I suck at figuring out what to do in this arena.

So my new therapist is setting me straight and it's eye opening. Self perception on my part is all but gone. I still THINK I can do way more that I actually CAN. That's good in some ways, but it leads to me doing too much on a daily basis. I'm learning that I need a massive amount of breaks when I'm doing something. I mean one load of clothes folded and to keep from being in pain or going to a place where it will take hours to recover I need to take breaks all the time. That shit is im-freakin-possible for me to do let me tell you. If there was ever someone born with ants in their pants it's me. I used to watch TV standing at the mantle for God's sake. Seriously. That way at commercials I could bolt off and do something; what? who knows, but something. I have more nervous energy than five people I believe. I just don't like to sit down. Well my hand is being forced because I don't like being in pain or being wracked with vertigo either. So I got a little 'sand' timer like Days of Our lives. When I need a break, I have to pull that dude out of my pocket and wait for the sand to finish dropping. It's so much harder for me to do than it sounds!

So here we are. My disease has forced major, actual behavior changes on me once again. I'm OK with it don't get me wrong. I really have no choice so it's not like I can choose another option. Well I could turn into a completely sedentary blob, but I can't do that either. Not until my hand is forced that way since that's always in the back of an MS patient's mind. It's just so different to be 'rehabbing' without the thought of functioning BETTER. I mean this is to make is suck less, which I suppose is the better option than to just let it suck to it's max. potential.

But it does give me some hope. And you all know how I feel about hope. Not hope that I'm going to recover, just hope that I can function at the highest level my burned out CNS will allow. Not to mention the fact it does give me some direction and a goal to work towards. It's getting hard to be OK with all of this decline that's for sure. But once again I have to pull out my mantra of 'it could always be worse', because it surely could. So I'll be doing lots of stuff that I would have laughed at a few years ago just to keep functioning, but whatever it takes. Not really working out per se, but doing things that are supposed to pinpoint a muscle, or make a nerve fire are what I've been relegated to at this point. I have to do it, my other option is to just spend more and more time on the couch until just getting up from the seat is a chore. It could get to that for sure on its' own, but with the way my muscles atrophy, it could get that way by me sitting around too.

This disease is insidious and I hate it. But I have to look it square in the eye if I'm going to do what's right. There's no fighting MS anymore. I'm not going to win. But I can at least make sure I don't let it take me a second before the point where there really is nothing more I can do. Hard to stay pumped and motivated with that being my mindset, but nothing I can do can make me not have this. So I go back to just trying to deal with this with grace and not succumb to the dark thoughts and imaginings of what COULD happen. It scares the shit out of you when you think "if I go downhill as much in the next five years as I have the past five years, I'm flat fucked", so you literally have to learn to live one day at a time and not let you imagination take you away. Keeping those out of your head is hard at first, but not sleeping and not eating and shit makes you learn quickly how to push thoughts away and keep them away. It's all part of the one day at a time thing. Today I walked in here to make this post. So draw a line in the sand for today. I'm walking. If I can't tomorrow, I can't let it eat me up today thinking about it. I have to simply respond to what is actually going on, not what might be going on.


So I'm trying to work on exercising those things which control my muscles, and that ain't easy for sure. I'll keep you posted and let you know how it's working out, I always do!

Monday, November 8, 2010

Retirement decision analysis and random thoughts

Well I most definitely made the right decision to retire. It's not like making that decision was killing me (it was a bit stressful), but you will always second guess a decision like that. I mean I CAN still walk and talk and type and all that stuff. It just had been reinforced the past few weeks how much being kinder to my body and taking the time to take care of myself has been a very good thing.

I could probably carry on about the reasons why, but it has literally taken about a month for my knee screaming to go down to just a raised voice. Had I been working this entire time, I can almost guarantee that my knee would have just fallen right off my leg. And you all know how important knees can be. But I digress. You all know I come on here to 'work shit out', so I'm trying, sometimes in vain, to come to grips with envying people's walking ability. I was in church Sunday looking around at folks I didn't even know just walking around with their kids not caring about how many steps they were taking. Not caring about "if I go over here and get this, I won't be able to go over there and get that". And just generally being themselves, ie, not thinking about the energy it takes to walk 100ft and if you'll have the strength to do it or not. I was one of those really content guys when the hammer dropped. I really was about as content as I'd ever been. Now you guys also know that I like to be proactive in thinking about stuff I know I'm going to have to deal with.

I mean you have the envy thing, not being a bitter handicapped guy, not being depressed; all of that type of stuff that I feel I ought to try my hardest to head off before it's on top of me. How to keep the monkeys in their cages I guess. I come on here lots to talk about how I'm going to make sure that this or that trap doesn't 'get me'. So why is it so damn hard for me to NOT accept my lot in life as it comes to getting around? I mean I've done a good job of accepting what this f-in' disease has thrown at me I do believe. However, for months now I can hardly watch a commercial where a guy is walking around an amusement park, or a ball game or whatever, without feeling the pang of jealousy. But I think I have it figured out. I have really been able to come to grips with the things about my health that I've able to grieve as a loss. I think it's that simple. I mean I HAVE grieved the loss of my career and am OK with it. I'm on the other side of it now where I don't look at people who are working with envy anymore. It's just right now what's getting to me is people simply walking around when I know they can just decide on a Saturday morning "I think I'll clean out the gutters today". It's that type of stuff that has been just killing me for some reason.

I think the reason it's so hard is that I HAVE NOT grieved the loss of my ability to walk because I still freakin' can. I mean I don't walk well at all anymore in the grand scheme of things. But if you catch me after I've sat around for a bit and I get up and walk 20 yards or so, you'd never even notice my disability. But give me 40 yards and I get to a point where my legs feel like they're made of concrete and I'm bouncing off the walls; literally. BUT I still can walk and I still consider myself fully ambulatory. Just don't make me walk very far. So since I want to stay like this, am I stuck being green with envy about people being who they are simply because I can't grieve it? I can't stay that way, but I also can't grieve the loss of something I haven't totally lost. I mean I've lost 90% of the potential and function of walking compared to a few years ago, but I'm still doing it. So as I'm thinking about this, it kind of hit me that the reason I've been feeling this way is I don't have anything else really going on. I mean I'm being a good housekeeper and all of that type of stuff, but I need some direction.

Our lives are defined by a series of accomplishments. You accumulate them. When you're done with one, you drive a stake in the ground and move on (forward) to the next one. So I think it's more feeling like I've lost the ability to have a direction since I've left work. I mean your direction is kind of built in to your job. Just maintaining the house is not the same as improving the house. So that's what I think I'm going to do. I'm going to work on the house. It won't be easy, but I've got all the time in the world; as long as I stay as healthy as I am now. I can tear a wall out a teeny bit at a time. I mean who cares if it takes ten days to do what used to take 4 hours? I'm home and I need some direction, something to accomplish to move forward, whatever.

Just because you can't do it all, just because you can't even come close to accomplishing what you could get done even months ago, does not mean you should just quit trying to accomplish stuff. It is a requirement for humans I do believe. Once I have a purpose, it's amazing what happens to my demeanor. At any rate, sitting around is not even what I wanted to do in my retirement, but you get so down about hardly being able to exert any effort, I didn't realize that I had just quit trying to exert any! I mean I was always 'saving it up' for work. That's not part of the equation anymore, and this was exactly why. Work was taking more than all of my energy. I couldn't do a damn thing after work, yet you still have kids, wives, lives, yada yada, so you do it anyway. Well I was making myself much worse. But I pulled back too far. Even when I lose the ability to even do 10 minutes of work with my hands in between hour breaks, I'm still going to need a purpose. If you have no purpose, what's the fippin' point? I mean that figuratively of course but really?, what is the point?

We all need a purpose; that much is clear and probably why I still will recommend as often as I can "Man's Search for Meaning" by Victor Frankl. I'm telling you, it only takes about a day to read. I mean I'm not saying anyone who feels they don't have a purpose should eat a bullet, but I am saying that if you don't have one, you should set about getting one! So since I can't impress anymore with my accumulated accomplishments, I'm just going to have to be fine with doing what I can do to feel useful. It beats the shit out of sitting around; although of course there is always a time and place for that, it just shouldn't be all you do!

Friday, October 29, 2010

This kind of sums it all up

This video is by Dr. Hubbard. He's a neurologist who is imaging folks in San Diego and then sending them off the get treated at a collaborating hospital.

If you're curious about what this is all about, or if you just want to see analogy boy's theories vindicated by someone with a big brain, then watch this video! So good and the reporter is excellent. He asks him about all the 'contreversial points' (there are none) that have been ginned up by the neurological "elite" and is just awesome. Best thing I've seen yet explaining this thing in a way that makes beaucoup sense to me.

Here it is:


http://www.komonews.com/home/video/106175483.html?ref=nf


I wish I knew how to not just supply the link!

Wednesday, October 27, 2010

last post about CCSVI

I feel compelled, now that I'm basically 1 - 1/2 years post procedure, to summarize my thoughts on how having the procedure affected me and my disease. A couple of things to start this out with to add framework to the summary:

1) When I got the procedure done, it was SO new. Hardly anyone domestically had done it and we were all hoping that this procedure wouldn't discriminate between the variants of MS (Relapsing Remitting, Secondary Progressive, and Primary Progressive) and everyone would get some of the same results.

2) My realistic goal going into it was that it stop progression at worst and actually make me better second.

Well as far as #1 goes, it does seem to have the miracle stories all coming out of the RR camp. I'm jealous as hell of course, but it also makes a massive amount of sense. I've explained ad nauseum about how, being a card carrying member of the progressive MS club, I feel the miraculous results were not achieved in me because of damage (degneratively caused) vs. inflammation (RR MS). I mean what happens when your arm gets lopped off? You hopefully stop the bleeding and get all fixed up and adapt. You still don't get your arm back. BUT if you have a broken arm, it can heal and go back to normal, or at the very least, regain function. But it is also just as useless temporarily. So I see SP MS as the arm lopped off scenario and I see RR MS as the broken arm scenario. Analogy boy strikes again.

As far as #2 goes, the book is still out for me on that one. I mean I've obviously decreased in function a bit (duh, I just retired!), but it just feels SO different. Very slow for one thing and I'm still far better off than I was before I went out to California in terms of overall wellness and just how I feel at rest. I have alluded to what I think about how aging with a compromised nervous system could just be a faster process than aging with an intact one. I mean it's like the insulation has been stripped from the wires (nerves). Those nerves just have to naturally age faster than their healthy brethren, no? Analogy boy needs to speak again.

To me it's like rust on a car. While your paint job (the insulation!) is very intact, your car looks the same for a good while. Scratch the paint down to the substrate and what do you get? Rust of course. What happens once that process is started? It goes batshit unless you REPAIR it. So the story I'm sticking to right now is that my nerves are like a shitty paint job. They are aging much faster than ones where the paint is intact. So since no repair mechanism was put into play, I took the car out of the acid rain, but I still have rust and the sun (the aging process) is still just killing my paint job!

So do I think it "worked"? YES I do. But for me, it was more like an event. We just shut off the spigot of damaging forces, but the damage is still there. Those of you that read this blog will remember my drywall analogy in the flooded house. I still think it's true. So I had some almost immediate improvements that are still there. If my MS was 'active' those would probably have reset and been overtaken by progression. I do think it worked, but I think my MS was too far down the road to start dancing and jogging again, but I think it kept me from plunging down the rabbit hole at breakneck speed. Those who personally know me may or may not remember me a few years ago, but I was progressing pretty rapidly. So I'm a big fan of the 'liberation procedure' and will continue to expose people to it as the best thing going for MS. To me, MS meds are shit. Plain and simple. They didn't work on me and they pretty much suck for everyone else whose MS is in the "it's starting to actually affect my daily life" camp. I would have sworn to you that Avonex was working on me for the first five years or so since I didn't have daily life affecting MS. Unless you're progressive out of the chute or have an aggressive case, most people have many good years post diagnosis until the disability starts to accumulate. Back in my very first post I talked about how I was on the cliff of home modification, life modification, whatever. Well since I was on that edge, I think the rust is still continuing since it had already started, but not like it was. To me, for right now anyway, I'm just aging with a severely compromised nervous system.

There are other things that aren't all glittery about this procedure to be sure. My neck still hurts like hell in certain positions (and probably always will). I can absolutely send myself through the roof if I swallow while looking down and having my chin pulled back a little. That's the stent knocking into something I'm sure. But I'm glad to have the stent. My jugulars will stay open because of it and I just need to not use that position that hurts!

So I'm wrapping up this chapter of this blog. I may not post for a while as I'm thinking about writing in other areas for something to do. I just have not had anything new to report about "My hopeful journey into actual MS recovery" for a while. Now it's just trying to make it from this point on. So this thing has more or less become obsolete to me. I am probably going to keep it open, but I'd like to change the name to one that's less than 100 characters or so! Thanks to everyone who read about this journey, your support was invaluable. I'm still here, still kicking (as hard as I can!), and still fighting this battle against an opponent I know I can't beat.

I'll probably actually post a lot more now that I'm retired because daytime TV SUCKS!!

Monday, October 4, 2010

Retired

I just published the last post since, I'm happy to say, this program automatically makes drafts like every minute so you don't lose any of your random thoughts! Well I suppose the title sort of gives it away so I'll get right to the monumental decision I'm in the process of making. I went to see my very cool neurologist today and she helped me make a decision. She didn't help me by steering me, she helped me realize that you don't have to have one foot in a nursing home to retire. I don't know what's what in the world of my progression, but I don't feel like I'm going down a hill like I did before the procedure, but I also feel like my left leg is weaker than it was six months ago. So much so that it has hindered me to the point where it's thrown everything out of whack except my eyesight. It's just now obvious that I wear out and have to help my left leg by limping at 9AM now vs. 9PM where it was a while ago. I mean I CAN still walk. I just can't walk very far. So I went up a notch on the old EDSS (Expanded Disability Severity Scale
http://mult-sclerosis.org/expandeddisabilitystatusscale.html). What it is is that you climb from a 4.5 to a 5 just by being able to walk less. And that's the thing about me and walking. We have a very tense relationship. I can do it, but just not very far, and hells no when it comes to walking around stuff, over stuff, in a tight space, or anything like that.

It's got me down for sure, but I know I'll get over it. What's happening is that my "load" is now taking as much time to manage as doing my job. By "load" I mean your stuff you have to deal with to actually DO the work. It started about three months ago as I started voiding less of my bladder at work. So then I obviously have to go pee more which in turn requires more walking and then the 'cascade' starts and everything starts functioning poorly. So I took a leave of absence from work. It's a wierd thing to do that knowing that you don't just have to go sort stuff out, or do some extra therapy to get back to whatever level of function you need that you aren't performing at. It's not like you go off to 'get over something'. There's no getting over this and no amount of relaxation or time off is going to improve my condition. But not taking care of myself can most definitely deteriorate my condition. And that's what's been happening. Stress, working too many hours, skipping therapy appointments to meet deadlines. All that kind of stuff. And it was making me progress again. I obviously can't say that with any kind of certainty, but I've only been off two days now and things like my bladder and bowels are already working markedly better since I'm allowing myself time to deal with my slow motility instead of just pushing it aside and dealing with things later with medicines that KIND of work.

So although I'm very anxious awaiting the approval of my disability application, I know this too shall pass and I can now manage my disease instead of trying to just blaze through the day and getting all stressed out and almost having many, many accidents, dizzy spells, fatigue and everything else that comes with pushing myself physically. The relief is absolutely amazing since I can actually sleep when I need to. Be still when I need to and all sorts of stuff that I didn't allow myself to do so I could keep working. Working is important to me. It has just gotten to the point where it was killing me to keep trying to be more than I am physically. I mean for real. The pain and headaches and weakness. It had just become too much and I'm taking a much needed break. For how long we'll see, but I have to reprioritize and put my health first. That seems so obvious since you can't do what you want without your health and in my condition it's even more important to take care of myself.

The one thing that is the absolute hardest to deal with here is to stay up for "the fight". Everyone who knows me knows I'm a fighter. I've fought this mother tooth and nail for ten years now. Here's the quandry: When you're fighting, you pull your motivation from whatever goal you are trying to achieve. In most cases, you fight to win the fight. There's no winning this fight. So I have to get up to have things suck less. Now there's a motivational poster if I ever saw one. "Exercise as much as possible despite the pain so things can suck less than if you didn't!". Totally facetious to be sure, but that's what it feels like. I'm going to be going to therapy and doing all that stuff, and I'll do it, but I dare not call it 'rehab'. Rehabilitation is to do something to get better. The therapy I'll be doing will just make things get worse slower I suppose. That's a very hard place to get motivated in, but I'll figure it out like I always do. I don't have an option and I've kind of come to a quiet calm realizing that, for me anyway, the procedure most definitely 'got in the way' of my disease progression, but has not completely stopped the disease process.

I firmly believe that is because of my type of disease; secondary progressive. My shite is not inflammatory anymore, it's degenerative. I don't even know if the same mechanism that screws you up in the beginning is even still in play anymore. I mean I haven't sprouted a new brain lesion in years despite progressing. And I'm fast approaching the 18 month mark where Professor Zamboni had published that for progressive patients at 18 months, there was really no appreciable difference. However, that could also mean I could stay stable and that's what I'm hoping for obviously, but things that have happened as of late kind of dispute that. Yes, I am most definitely in a better spot than before it all since I'm still not dependant on my cane. But I most assuredly can say that my left leg is weaker than it was. That means progression. Whether it's just aging with a screwed up nervous system (ie, things age much faster in this state), or degenerative progression I don't know and really don't care since there is nothing I can do about it.

So I WILL keep up the fight since that is the ONLY alternative vs. despair. I simply won't go there; I can't. I'm not good in that place and you all know it is paramount in my mind to figure out how to be somewhat positive and forward thinking through this. I can't say I'm not bummed fo' sho'. Who wouldn't be? I'm allowed that and it doesn't mean I've given an inch to anything. It's just a shitty situation. So now I have to go on long term disability while I figure out another way to make money. I haven't a clue what that will be, but I hope this all has opened up some sort of creative door in my engineer's brain and I can start creating stuff like books or poetry or something. I mean aren't all the good artists tortured souls? lol! So anyway, I'm getting tired of typing and am about out of thoughts for the moment so I'll sign of with someone else's thought!

"There are two classes of people on this earth; those who espouse enthusiasm and those who despise it" (Germaine deStael) I think I am an espouser....but don't tell my wife!!

Monday, September 20, 2010

Still movin' on to a point

My last post literally left me exhausted. After the last few years of being an MS patient named Lew, I went off to become Lew again; who just happens to have MS. I'm doing pretty well with all that, but it's tough when your illness is advanced enough that you can barely push it off to the side for hardly 15 minutes with out a bathroom reminder, a dizzy reminder or just good ol' pain. So I'm still working on living WITH MS and not FOR MS. I was doing that. All the constant introspection to see if things are better or worse will literally drive you crazy if you're not a completely egocentric person to start with.



So I had realized that I needed to not be constantly talking about 'IT'. I think I was wearing my wife out a little bit and didn't even realize it. Thank God my wife is just like me and will say what needs to be said when it needs saying. One profound thing I've been struggling with, and still will maybe forever, is relating to the 'rest of the world'. Don't get me wrong. I haven't gotten out of touch, or gotten bitter or anything that prevents that, but something was/is going on there that I just want to try and define. For some reason, defining things and laying them out there in writing or by talking, really helps me process it. It's almost like I'm going to struggle with "this" or "that" until I write it down. Maybe it makes it more real, or maybe it's just me drawing a symbolic line in the sand and making it solid rather than ideological. So what's the problem?



Well for me it kind of hit me when I was watching some reality show (it was probably Top Chef) and watching someone just getting bent completely out of shape. Now I can do that to, so it wasn't just the act I had problems relating to. It's just that I had gotten to the point where it just seems like everything except getting healthy/staying healthy doesn't deserve that much energy. I found myself often times thinking that 'everyone else' is just complete drama queens. I was coming from the place that it all seems so trivial; everyone's problems that have them carrying on. I was thinking "that's all small stuff". And maybe that's true. I often think about how astonishing of a person I would be if I can get healthy again. Like the guy who kicks Stage 4 lung cancer and can truly live like he's dying for the rest of his life and only give big energy to 'things that matter'.



But that's so nihilistic of me. You CAN'T live like you're dying (I'm using the Tim McGraw song as reference here) until you have that situation actually happen. Sure you can try, and you can even make a very good effort. But those who've been there and those who are there know what I'm talking about. It's like the reason why AA works for Alcoholics. You just can't quite relate until you've lived it. I mean you can be uber educated about it all and you can even work in the field for years and years and although you may get it intellectually, you can't feel it. So me smirking at people carrying on about something or other like I'm above all that and why can't they see it as 'the small stuff' is doing nothing but making me resentful of everyone else. And that's why I'm writing about it today. It's all part and parcel of me trying my damndest not to get resentful, bitter, depressed, or whatever from all of this. I know it's not a task like something at work, but that's the way I have to tackle shit, so here we go.

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.

Saturday, July 24, 2010

A couple of weeks past my one year 'check up'

Well it's been a few weeks and I'd been waiting on the images from my MRV to be able to show what's what in my head and neck instead of just describing it, but since that's where we're at, let's get it on. As those of you who are frequenters of Facebook and ThisIsMS.com know, things haven't been totally on the upswing for me in the last few months. I need to put this all in context however. After all, I'm sitting here in my dress clothes getting ready to go to a wedding reception NOT wearing my hiking boots. Those of you who know me personally know that I wear boots or hi tops 100% of the time since shoes simply don't have enough support and it will wear my calves out in 20 or so steps. No shit. I can't explain it and I really don't know why, only that it is. I still wear them most of the time, but before the procedure they were also my bedroom slippers, I would step into them right out of the shower and it was actually pretty funny sometimes; at least according to my lovely wife. Suffice it to say that I was scared to wear anything else since I would get weak, in pain and wobbly very fast out of them. So I didn't EVER wear anything but those dudes out of the house. So even though this isn't a post where I tell everyone about all the things that have improved, I'm still so much better than before it's remarkable. BUT since I did have improvements, it is absolutely a let down when things start coming back.

So since I posted a while ago about all my symptoms and whether they were better, worse or unchanged, we'll just do it again. Here is that list from that post:

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all) Better
Stiffness (ha ha right after that!) Worse

The things that have gotten worse are the constipation (qualifier that I'm now taking two different drugs where that's a side effect, so the jury is out on whether that's actually worse from MS or the drugs). I've been getting transient vertigo when I over do it and that was almost gone. Once again, it's still markedly better than a year ago. Leg pain is the biggest thing that's gotten worse. If there were such a thing, I'd go for a knee transplant. My knees hurt so damn bad I'm walking more bowlegged than Robert Duvall; and I already WAS somewhat bowlegged. And finally my leg strength has diminished somewhat also. I simply can't be on my feet for as long as I could even a few months ago and can't walk as far.

So now you know what's going on with me. Nothing has gotten better, and those few things have gotten worse from my new post procedure baseline; not from where I was before the procedure. So all is not lost. It's just scary AS HELL to not be improving since the opposite of that is getting worse. And no one wants that. Life is good, just not as good as it was a few months ago and it's probably more scary than actually physically life altering so there we are. So I'm hating stairs because of my knees, hating getting dizzy again, but loving that I still don't need my cane. So on to what we 'found' at Stanford.

If I would have said that I was fine, Dr. Dake would have just said everything looked fine too. Yes, I'm still the proud owner of two McDonald's straws for jugular veins. And yes, I still loves me some stents. That ONE SINGLE article in the Wall Street Journal has everyone majorly histrionic concerning stents. Don't ask me why since we ignore the people trying to tear this down on every other front, so that one puzzles me. After all, there is a 40 some percent restenosis rate with balloon angioplasty, so count me in as a fan of stents. But since I didn't say all was hunky dory, he kept looking further 'down the MRV'. Now I have to describe what we saw without pictures. I hope you all can picture this in your mind's eye, so here goes.

When you are looking at your images from the top of your head down, you see your carotid arteries and your jugulars on the right and left. In the image, your nose is at the top of the screen and your ears are left and right. Well your carotid arteries show up as these perfect, white circles on either side of your head since the contrast dye makes them appear that way. Your jugulars are right next to them. The first, pre procedure images had my nice round carotids and my jugulars were just these flat lines. Now my jugulars are even rounder than the carotids. They look great when great means open for business. So since I said I wasn't great, he kept looking downward into my body. Your jugular veins 'dump' into your braciocephalic veins, it's either those or your subclavean veins. If anyone points out to me that those are misspelled, you would probably be right; I don't feel like googling it right now and that is the hooked on phonics version. Well those veins that the jugs dump into (know I'm not talking about actual jugs Lisa you perv :-)) go 'across' your body, or 90 degrees opposed to your jugs. Well there's an area where that SUBC or BRACIOC vein goes around something (I think it was my trachea) and it's stretched so hard that it is markedly narrowed. He noticed this since there was a collateral vein shooting off. Your body just doesn't have collateral veins unless it needs to manufacture them since the main vein isn't doing its' job. They show up on your legs as spider veins, that's what they look like in MR images also.

So we also looked at my last venograms from my last procedure and there IS a flow issue there. Not like the ones that were in my jugs, but one nevertheless. So I could be having reflux right there. If you remember, he saw something on me the first time that he didn't know what to make of, collaborated with other doctors, and I went back out and we fixed it. Same story this time. He told me he could put a stent in there, but he just doesn't know if it would do anything or not. So he's supposed to send my images around to other guys that have been doing this in Poland and other places and see if they've encountered this and what they did for it. Just because there's a collateral vein there doesn't mean that the occluded vein plus the collateral aren't doing the job, but we do know there's at least some impingement to flow at that area, we just don't know if jamming a stent in there will have any effect. So we wait. This has given me a good reality check fo' sho'.

Let's say that is causing issue, and there's nothing we can do about it. I've already accepted the fact that I have MS. So when MS'y things happen, I can't act like someone shot my dog. Those things happen when you have a condition. So getting upset every time things happen is like banging your head against the wall. But that's what I was doing. I started to get dizzy and I was all screwed up about it. We didn't know if this was going to take us back to normal; hell, we didn't know anything. But I see other people who are having remarkable results from this. Guess what? They are still relapsing and remitting. I'm progressive. That sucks but it is what it is. I can do NOTHING about that. I'm still working. I'm still doing social things (not everything, but 'stuff'). I still have a great marriage and daughter. So I can't 'woe is me' this situation. I just can't. Those of you who follow this know that I'm hell bent on handling my MS with grace no matter what happens. People do it and I have to be one of them. Sometimes when you get scared, you get desperate and feel hopeless. It's not to say that those times don't happen. They do, it's that you can't let them define you. I mean this is my life whether I like it or not. So I'd be a giant pussy if I let it make me put my head in my hands and just give up. My life is decidedly not what I wanted it to be; but it sure could be worse. But I can't do a damn thing about what I am now. I need to like myself and have a way of looking forward to tomorrow. When you quit doing that, you are screwed. I can't take self esteem from physical prowess anymore. Boo hoo, I haven't been able to do that for a long time, so I need to get over feeling envious when I see people doing things as simple as dancing at a wedding. I'd LOVE to be able to do that, but I can't so I need to move past that. I have to say that I do miss the nutjob and very physical guy that I was. But that in and of itself is not enough to knock me down. People who let that get them are not working hard enough.

I still have loads of hope locked away. No one, except someone who needs it, quite understands how powerful hope is. It is probably the single most important thing that keeps us out of the looney bin. It's amazing how my attitude towards hope has changed now that I watch what happens to me and others when you get some hope. It's an awesome thing hope is. It allows you to look forward. It's kind of that simple. It's a reason. It's whatever, I can't fully express it like I want to so I'll stop. A good analogy would come in handy here but analogy boy just doesn't have one! OK, here's sort of an analogy that I'd like everyone so inclined to read. It's a woman's take on having a disability (she just happens to have lupus) and it is the best thing I've read in terms of describing what it's like to people that aren't sick. Here it is, and it's great:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I read a story in 'The Week' last week about the only surviving quadruple amputee that got that way in Afghanistan. He has no arms and he has no legs. Yet his spirit is indomitable. The whole hospital is in love with the guy and he's touched a nurse so much she wants to marry him. He talked about wanting a daughter. You know why? So he could tell her first date "you should see the other guy!". Now how can I EVER feel sorry for myself when he's out there?

Thursday, July 1, 2010

Well this sucks

I have to write down what's been happening to me as of late. Part of it could be that I folded my knee in a complete flexed position (calf pressed to hamstring) with all my weight on it and felt like my knee was blowing up, but I don't think so. A bit on that: I was walking down the stairs and just caught my right (good leg) heel on the carpet of the stairs, luckily only about 4 stairs up from the floor. Well with feet that don't move too quick, I couldn't catch myself by hurrying down the last few steps, so I had to jump to keep from hitting my head on our buffet. My knee just buckled since it was my left leg. So now that knee is screaming in a big way. Going up and down stairs is the hardest part. Especially up when I try to lift with the left leg. It literally feels like a nail is being driven into my knee. The feeling is on the inside of the leg at the area of the knee that directly 'looks at' the other knee.

Well while that sucks, I have been feeling like I can't do shit here lately which started happening before I hurt my knee. By lately I mean the last week or so, but I know how things that are injured can screw me up all over, that's why I mention it. This has all been since my last post. The marker I am using to say all of this is camping. Those of you that keep up with this blog know I camp. Well getting ready to go and setting up camp (I have a trailer so it's not like setting up REAL camp) is harder than it was even on Memorial day, let alone last year. This was a line in the sand type of activity because of the large chunks of time between camping trips, so I notice it more succinctly. I also have been having a harder time peeing. That really sucks as that has been, besides my eyesight, my longest running symptom and had remained pretty much the same for a long while and actually got a little better post procedure. There are some things going on at my stent site that make me go hmmmmm.

As some of you who also read this know, I have a stent in an area you can feel behind, and just below, my ear. I've talked about it being swollen and talked about it hurting mildly. Well since this all started it has, no shit, hurt worse than usual and also I have a bit of puffiness just under it that makes is almost feel like swollen glands when you're sick, but only on that side, and it's much softer. It's also pretty tender. So my hope is that there is something to that. I don't think it would have shown up on the MRVs I've had since then since we were looking at the veins only, but this time I'm going to make sure we look at that. This really sucks as I had really, really felt stable up until now.

Now don't get me wrong; I'm still doing the things I need to like working and keeping myself taken care of and the house picked up. Honey, if you're reading this, I don't mean I clean the house. We have a trade off where she does things that require cleaning and I keep things picked up. I don't have to bend over as much and for just quick bends to pick something off the floor, but I digress. I'm still GOING camping, although there are things about it I'm dreading. Just things that require a lot of movement. We're the types that have to have the camper just so to relax. Well then you have to take it all down and my wife has a shift at the hospital. Other than that I AM looking forward to it. It beats working but it will hurt at times. I'm just getting exhausted after not doing shit. It's frustrating, once again, because I've been doing so well. But this paragraph is to let you all know I'm still living my life, it just has become hard and painful again here lately. And it's been quick. I don't know if it was a 'straw that broke the camel's back' type situation, or something is clogged up and shits' gone wild.

Which leads me to theory corner. Since that area has been tender since before my MRV with the guy up in Michigan (E. Mark Haacke) and he didn't notice anything, I think once you go progressive, something else happens. Yes I know you quit popping off lesions and quit having relapses, but I think it involves your upright veins. I am saying that ignorant of whether anyone has looked at these. I'm talking about your vertebral veins. At least I think that's the spelling. These drain your brain when you're upright. Your jugulars only drain you brain when you're laying down. I just have a feeling it becomes 24/7 when you are progressive. I have no way of knowing that, but it makes sense to look at those veins. Hell, he may have, but I don't remember talking about it. That's another thing that's been going on.

I've been struggling for words (I know) and not being able to do simple math (I know again). For vocab boy, that's a toughie! But seriously, it does feel like there's something going on. I just hope it's not MS progression, but if it is, I once again hope for the doctor to find something wrong. I really do. So I don't know what to think about this. Is it ineffective on "my" type of MS? Do I have lyme disease? I just don't know the answer to those questions. I doubt anyone knows the first one.

There is this article:
http://www.expert-reviews.com/doi/pdfplus/10.1586/ern.10.69

that really makes me hopeful that some of the money we throw down the toilet (of course, my opinion, but just ask anyone on these shitty drugs) on trashing MS patients' immune system will be diverted to stem cell research. As I've always said, and many others have echoed, this is probably just a piece of the puzzle. I've always thought that after we shut that slow blood drainage down that we'll need repair. So off I go on another journey I imagine. I'll be first in line at Ohio State if they ever have a trial for stem cell therapy. While I hope that my Dr. at Stanford finds something, I'll also be keeping an ear to the ground on the stem cell front. It should give me something to do.....!

I also have to give credit to my friend Joan for turning me on to this article. Even though we don't talk every day like we used to on ThisIsMS before all of this, that woman holds a special place with me and I imagine I do with her also. Love 'ya Joan. I imagine I'll wait until I get to California to post again. Keep your fingers crossed that I need to be roto-rootered.

Friday, June 25, 2010

I am so busy it's not even funny

I haven't posted in a while and I wanted to just give a brief update as to what's been going on. I have been exercising and actually feeling some decent benefits from it. I had made a very large post bemoaning exercise, but only once you've passed a certain point in your disease progression. I was fully feeling, after about a month of nothing but hurt, that exercise of your muscle groups that have severely damaged nerves is detrimental. The muscle groups that didn't have as much nerve damage were feeling like they were supposed to. They would get sore from working out, while the damaged muscle groups were experiencing nothing but pain. I'm glad I didn't publish it.

What I believe occured is that I was so far out of shape and had so much atrophy that I had to bust through that because literally the day I was going to post it, I had more endurance in my left leg where the nerves are damaged. So I still can't do much; about 15 minutes on the elliptical and about 15 minutes on the recumbant. When I'm done, I literally can't walk for about 5 minutes without falling, so I just sit it out on the recumbant. However, about an hour later I'm starting to feel energized and stronger. That's a very good thing.

My bladder is acting up a little more than usual in that it takes me literally about 5 minutes to get out my 200 ml, but I am still getting out that amount. It's just harder to do so. Hopefully the Ampyra I'm getting ready to try will help with that.

I'm feeling really good about my decision to have the CCSVI procedure done. Looking back a year ago, I really am much better off. Like I always say, there's damage in my CNS that won't get better without a repair mechanism. That is what it is. But my being bummed about that and not just all giddy that I stopped progression is telling in itself. I have gotten somewhat better, and I want more. If NO improvements would have happened I think I'd be OK with just staying the same. But since I got a little, I want more. It's human nature.

I wanted to update since I know silence leads to speculation. There's so much misinformation and speculation out there now I didn't want to contribute to any of it! I am still doing very poorly in the heat, but other than that, I'm not doing too damn bad and am still working full time and not even thinking about not being able to handle it. A year ago? Thinking about long term SSDI was probably on my mind 4 hours of an 8 hour day. It's just huge that this has allowed me to stay employed and engaged. Being that distracted at work can make you lose your job for other reasons besides your condition! I go back out to Stanford on 7/12 and will give a full report on what they find. There has been some good speculation concerning whether or not just getting your jugulars and azygous veins opened up is the whole enchilada or not. I don't know, but I really feel like I bought myself some time to actually find out instead of jumping in with both feet into something I KIND OF understood. That makes me happy. So someone else can be a guinea pig on other parts of our circulatory system if anything comes of that!

Wednesday, June 9, 2010

Normally I don't do this, but....

I don't normally get too excited about an isolated event. MS teaches us, and you've all heard it, that there are good days and bad days. That is totally true when you're relapsing and remitting, but it's somewhat true also when progressive, but not as markedly. So one thing that I constantly test myself with is mowing "the hill". It's a small hill behind my yard that is quite steep. It used to be covered with honeysuckle and lilac and you couldn't even walk in it, but me and my wife cleared it out over the years and I keep it mowed. My daughter has been keeping the yard mowed, but I don't like her on the hill, but she has done it.

This hill was something I could not even do pre procedure, but have done it many times since then. The last 6 or 7 times, it has been the same story. I start with a modicum of energy and about 1/4 of the way through, I'm trashed. Matter of fact, the last two times I did it, my left leg got so bad I was literally dragging it across the ground and when done, I just would sit down right there in the middle of the flippin' yard and have to wait 5-10 minutes to even get back to the house.

A good deal of the problem with the energy drain is heat intolerance. We MS'rs melt in the heat; it actually used to be part of how you get diagnosed I believe. Get 'em hot and watch 'em wither. Well for a few years I've noticed that I don't sweat like I used to. This is a topic that has been talked about a good deal in the MS community and lots of people post CCSVI procedure comment on how they're sweating better. Well I used to sweat like a whore in church and I am one of those guys that can soak a shirt through just being in the sun. It has really gotten difficult to be in the heat and not sweat. Your head gets all over heated and you feel like you're having a heat stroke. Then your vision goes and you just get weak as hell and start stumbling around and it's just a shitty situation.

So today after work I decide to try the hill despite it being 80+ out and very humid. Well I started and it was going pretty well but I was starting to get too hot. Like throwing a switch I went from going "oh great, I'm going to over heat" to "shit, I'm pouring sweat!". It was like something just tripped. I can't explain it. My memorial day camping trip was very taxing as I simply couldn't even be in the shade during the heat of the afternoon as I was not sweating. I've always been heat affected but once the sweat started pouring, I'd only 'go down' so far in terms of function. Lately it has been going down and keep going down until I can't do anything.

I don't know what happened. I was thinking it was maybe high humidity that wasn't there over memorial day, but I was sweating my ass off. When I took a seat when done and bent over to tie my shoes, it was almost a stream pouring off my nose. It felt so damn good you don't even understand. This is giving me some hope that maybe I can enjoy the outside this summer. I never enjoyed it like the healthy days of course, but only going down to a known 'floor' and not getting worse let's you know your limits instead of just not even trying since you don't know that you can do ANYTHING. It was really great. When I was all done, I actually was walking kind of normal. Two weeks ago when I did this, my daughter came out of the house and was very concerned. I went right up the stairs on my deck and sat down and had a glass of ice water. It felt so normal! Doing yard work and sweatin' my ass off was one of my favorite things to do. I love to sweat; I've always thought it was kind of cleansing. But just getting hot and getting a beet red face and ahving your temp. just go up and up sucks.

I didn't have to cool off artificially with ice on my neck or anything; my radiator was doing it. Awesome. Now I'll probably pay the Gods of superstition who control 'jinxing' for spouting off about this, but this was really cool. It was one incident, but one I know the normal outcome of very well, so I don't look at it as just having a good day. To be truthful, it wasn't really all that good of a day physically. The most astounding thing about it is that I could've kept going. All the other times this year, by the end the mower is my walker and there's no possible way I could keep going. I've fallen many times while doing the hill also. This was flippin' great. It is an amazing dynamic that happens when something like this occurs. You know you shouldn't because of the possible let down, but you immediately start thinking about getting more engaged in all kinds of stuff. Doing this, doing that, a little of everything. I guess it really comes down to that. I did this so I could do more 'stuff'; it's pretty much that simple.

Wednesday, June 2, 2010

Some clarification and a forum post I just made

Based on feedback from my last post, I wanted to expound more, and I replied to a posting on the forum ThisIsMS.com. It has a lot of educated about CCSVI lingo, but most of it is easy to follow. I'm copying and pasting it on here basically because I'm lazy! So here it is and it should dispel any thoughts of me sitting around crying in my beer! This is a response to other forum members being concerned about what is happening and also having fresh doubts about the merits of this procedure. Here it is:

Hey I'm flattered as hell! Most of the time when folks are talking about me it isn't so flattering! lol. At any rate, keep in mind that I'm still walking WAY better than I was before the procedure. Way better. No cane and no limp until I walk a good distance. Don't forget I needed to be wheeled through the airport the first time out. All these comparisons are from my new baseline which is significantly higher than it was pre-procedure.

But the stuff I posted about is real. The new clonus, the dragging the throw rugs around and tripping over 1/4" high thresholds, plus leg weakness on the left side; mostly in the hamstring area. It's there for real but I have to qualify it a little better at least in terms of my interpretation of it.

Since I'm known as analogy boy, let's use the floods in Nashville as a reference. Let's say your house was underwater for days and days (active MS). If it stayed underwater it would be considered to be 'under attack'. But let's say the flood waters recede. Your house is still standing and the source of the active damage is gone. Is your drywall in good shape just because the water went back? Are the water stains and water saturation and actual damage going to go away? No, it's now waterlogged even though there is no more active damage. And it's deteriorated and will not fix itself just because you took the damaging force away. And it never will. IT NEEDS REPAIRED. That's my CNS. I don't have inflammatory MS (RR). I have SP, so there's damage that doesn't go away when the inflammation is removed.

So I'm now aging with weak drywall. It's going to deteriorate naturally much faster than good drywall would have. So I suspect there's some of that going on. To be cliche, it is what it is. My nerves that are damaged are aging more quickly than healthy nerves age. So as many of us suspected, if you have an actual damaged CNS, and not a CNS affected by inflammation, you're going to need Step 2; repair. Is it stem cells? Is it something else? No one can say yet as this is, as Joan has pointed out, new stuff; we were guineas of the highest order.

My spirits are good. I'm pissed that I didn't get the results of people like Rhonda and Mel, but I don't begrudge them one bit. The flood waters were at their doors, but still behind the sandbags. So when the waters receded, the symptoms did too. THAT IS AWESOME NEWS. Why? Because maybe if CCSVI gets researched to death, it may become the first thing you do upon diagnosis. Then maybe nobody has to progress to progressive and deal with the damage that has already happened to me and all of us SP'rs and PP'rs.

I am absolutely grateful to have been a part of this. I am now in the camp of "I've done everything physically possible to beat this disease", it's just that everything possible still isn't a cure and a fix.

BTW, I was on Tysabri and progressed the WHOLE TIME, so there will be no talk of me going back on that crap. It didn't work; period. Hell, they even tell you it won't work when you're progressive so this line from LeAnne:

"Lew stopped Tysabri medication after he had the CCSVI operation and my feeling is that maybe we need to stay on the meds until we know the true impact of CCSVI. It may be a case of CCSVI and meds together to beat this disease."

isn't really anything I'd even remotely consider because why pump myself full of high priced poison (my opinion) if it isn't working? What's the definition of insanity? Doing the same thing over and over and expecting different results. It simply didn't work and I'm not going to stay on drugs that aren't working. It doesn't even make a modicum of sense. If there was even an inkling that it worked, I'd never have stopped it. Read the Tysabri book. The big marker for using Tysabri is to keep you from going progressive or getting past EDSS 3.5. I was a 4.5, so I shouldn't even have been on it in the first place. Maybe it helps RR patients, but it didn't do anything for me except drain my wallet.

The visit to Dake is going to be telling. If he says my jugs still look like McDonald's straws, it won't be what I want to hear, but it will reinforce my theory about aging with damaged nerves. You have to remember, my most recent active symptom when I was sliding was all things left leg, so it's not surprising in the confines of my theory that it would be the first thing affected. However, let's hope he finds some new area of stenosis, or has better insight into the azygous. We DID check my azygous very robustly last time and it was flowing well. Maybe it's the membrane thing that Simka sees. I don't know and neither does anybody else really. If there's flow, it's working right is all I can say. I suspect my theory is right.

And remember one thing. MS sucks and it makes your life hard. BUT it is still simply that; life. This is my life. Michael Phelps' life is his life. No one said all our lives are the same or be at the same level of suckiness. I have this to deal with. Life is harder, but I'm still alive and still searching for what makes me happy and content just like everybody else, healthy or not. How can I "woe is me" this? We didn't know if it would be successful or not. So we were just hoping it would work. That's it, that's really it. If I start deteriorating more rapidly again, guess what? I start all this madness over and move on to the next thing if there is one while I'm still around and kickin'. That is doing all I can and we all need to. The more you learn, the more you realize that you shouldn't do anything your dr. says unless you agree with it also. That's what comes with having a disease with such poorly understood etiology. They don't know shit about this disease, only what they are supposed to prescribe you. Call that an opinion or a fact, but it's obvious no one knows enough about this disease to be super confident recommending ANYTHING.

Sunday, May 23, 2010

Update

Well I haven't posted in a while, and this one isn't going to be that long either. I feel OK is the best I can say. My demeanor, my dizziness, my bladder, bowels, all the functional stuff still feels unchanged. My legs, however, don't feel unchanged. They feel weaker. Now it's only slight and I'm still not using my cane yet, but I know for a fact that I can't walk as far as I could even 3 months ago. This sucks bad, but I still know I did SOMETHING to get in the way of the slide I was on. I just know that things are getting slowly worse in my legs now. It's been a while that I've sat on this and now I have to say it out loud. Not what any of us want to hear, but reality is reality. I'm still working and living and all that good stuff. It's just things that I did easier for a while after the surgery are becoming harder again. The heat is starting to really bother me again too.

I hope to post more after I've really pontificated on it and done some self run experiment type stuff, but I haven't posted in a while and this is why. It's not a virus or a 'bad spell', it's just that my legs are getting slowly weaker and I promised to be honest, so here I am doing that. The things that make it obvious to me are things that I've not experienced yet. I was very hesitant to post about this until there was something new happening, not just waxing and waning of existing stuff. Well I can't put my sock on my left foot by pulling my left leg up anymore. I have to pull it up with my left hand and wedge my heel on the bedrail or on the chair I'm sitting in. I can't hold it up even for 2 seconds to throw a footie on. And I have to consciously watch lifting my left foot high since I've been catching it on the flat ground, denoting the start of foot drop; which I've never had. Also if I'm sitting and I raise my toe off the ground and then push on my knee, I have some pretty hardcore clonus. All new stuff.

It's not like I'm sinking into the pit of despair or anything. As I said before, I still feel better than I did pre-surgery overall for sure. It's just that my legs are getting weaker and that is decidedly not a good thing. I don't have my limp back until I'm very fatigued and that so I know I'm not back to where I was pre-surgery. My one year checkup is coming up in mid-July and I hope to God Dake finds something. I don't want the 'all clear'. I know he can't do something surgically for me right now, but just knowing that there's potentially a reason for this would be great. But as we've talked about many times before, the progressive camp is/has been/was/always will be, sucking hind tit to relapsing and remitting. So I now have to start working on letting myself feel joy when other's not so afflicted get great results from this instead of turning green with envy. My mind is a bit scattered right now, so I'm going to cut this short. As I said, I'll post again soon when I've got this all sorted out.

Friday, April 30, 2010

Thoughts on exercise and MY MS

I capped MY in the title because we all know each of our own conditions is unique. I mean when you think about it, it makes perfect sense. Random location of lesions in your CNS, and peoples' Central Nervous Systems are totally unique to each individual. So anyway, my personal thoughts on the value of exercise in progressive MS is sort of against temporary conventional wisdom based on what's going on with me. The conv. wisdom is that exercise is nothing but 100% positive for MS. That is mostly true, but not completely I'm convinced now. Allow me to elaborate (I hate elaborating...).

When your CNS is already "under a load" dealing with MS, I'm not so sure it is really good to push it past its' capacity. By that I mean that just doing mild exercise like light weights and walking (maybe it's just low impact that's the key) makes me feel markedly better than trying to exercise strenuously. I know, I know, I have a tendency to push that shit. But this time I really have not. Ever since the infamous roto-tiller incident, I've pretty much learned my lesson. I have taken it slow and worked up to trying stuff at what I consider a snail's pace. Maybe my definition of a snail's pace sucks, but I'm talking slow. But when I do it with much lower effort but for longer periods, I feel better, I can function the rest of the evening and all that good stuff. It was, of course, utopia when I was temporarily unemployed, but we couldn't have that while I'm still able to work, so that vaca. was way too short! I mean exercise is not a 'building activity' anymore. It may be cardio, but I haven't pulled the trigger on something like an elliptical or stationary bike yet so I haven't foud that out. Since that's a system and not a muscle, I imagine cardio can be improved, but everything is controlled by, in my case raggedy-ass, nerves.

Quick sidenote: I just snuck into the hall and watched my daughter through a crack in her door jamming on the bass. It's amazing how good she's getting; it's freaking me out in a cool way!

So I feel much better than I did a few weeks ago. I just only have so much energy and work is a must, so, for now, I must do that. It doesn't feel like it's at odds with taking care of myself 100%, but it just makes it harder. That's what this shit really is right now. Through no fault of your own, life just becomes hard as hell. I know why, sure, but it sucks eggs. It is a decidedly eggsucking activity this crap is. What it comes down to mainly for me is that my knees end up hurting so bad it makes me limp, which makes me tired, and so on and on. So as I'm writing this I'm talking myself into an elliptical machine. I've been saying that for a while now. I just need to do it but I hate to spend money right now. Putting just one kid through Catholic High School has put a dent in my budget, well actually it's the economy stupid!, but I digress.

I just needed to talk about that as I promised to blog about my adventures in exercising and I haven't, so now you know. I was getting discouraged, but I just do what I'm able and need to quit guilt tripping myself. That's probably why I'm writing about it. I seem to need to write it down to take it in when it's a self taught lesson. Well in the words of Forrest "that's all I have to say about that".

Saturday, April 17, 2010

The weekend

Well the weekend is here and I did keep up my exercise like I wanted to. I did not jog my 1/4 mile last night as I was scheduled to, but I did other stuff. The jogging, while very 'soul satisfying', may not be the best way for me to exercise...yet. As I explained a week ago, it's not my muscles so much now that won't go. It's the damn knee. It is killing me! Also my hip to a degree and I'm 99,9% sure it's because of an irregular jogging gait. Just too herky jerky, and thus too much of a pounding to my joints. So I went out back and picked up all the huge pieces of lumber from the tree that got hit by lightning the other day. That was a trip let me tell you. The tree literally exploded and sent wood all over the back yard. About 1/2 of it's still standing, but that dude has to come down! Then I mowed the back hill. I could not mow the back hill before the procedure. Parts of it are quite steep whereas if you are cutting in one direction, your hands are literally up at eye level as you are pushing it uphill. Well I did it ninety degrees opposed to that, but it's still a bitch, and as I've said, something I was incapable of before.

And the great part was that I was absolutely drenched in sweat. I loved that part. When you are used to a soaking sweat on a daily basis for probably 20 years, not sweating for a long time makes you wonder whether you can still do it or not. I mean really. So overall I'm keeping my effort up and working the upper body and running all over the place in little jaunts like to the port a john at my daughter's soccer games! The grass is more forgiving and I only go about 100 yards or so, but I do jog it, and that feels really good. I just can't road run until I get a steadier gait. I hope it happens, but if not, I'm doing other stuff now like yard work. That kicks ass. Yard work is something I totally enjoy, but haven't done for a while. Regular readers of this remember the 'roto tiller incident' right after I had my procedure. I think I could do that now just fine. It knocked my dick in the dirt right after my procedure, but I wasn't even recovered from the surgery yet, so it was a dumb move as it was really pushing it. But I just love being able to make plans and get excited about DOING stuff. Going out, things like that which I had quit doing.

So a quick update, I didn't want everyone to think something had happened and I had slipped back. Not able to keep up with jogging, but that's only because it's murder on my knee. So I'm simply exchanging jogging for other stuff! I'll update in about a week if I think I might actually be getting back into a little bit of shape.

Tuesday, April 13, 2010

2 days later

I decided to post again every other day for quick updates. I know my last two posts have been chock full of positive news. I'm still feelin' it but for fellow MS'rs, I wanted to keep it going. You see running (it's kind of funny to call it that, I'll make a video once I borrow a camera) sounds impressive, and from where I was a year ago, it is. But the caveat here is it needs to stick. In other words, running a 1/4 mile one time and then not being able to run again for a week is not what we're after here. With MS, everything is a test; everything. Did getting up from that chair make me dizzier than yesterday? Did walking down the hall at work make my eyes go foggy yesterday? You are always on the lookout for things to get worse so you can go get 'roids, or you are looking for things to get better which means maybe you're stabilizing.

Well now after the procedure, I'm also looking for improvement. So running Sunday means I have to try and go at least as far as I did then on Tuesday and keep it up every other day. If this happens, I'll put a notch in my own belt. Well I did run the same 'course' again today plus about 100 extra strides. I actually could've kept going muscle wise, but my feet weren't coming off the ground very far and I thought I better stop less I fall. When you're foot is scraping the sole on the stride bringing your foot from back to front, that's a sign you need to start lifting your feet higher if you can. Well I'm not coordinated enough to do any high stepping, so I walked about another 1/4 mile and then did 10 sit ups and 10 push ups and 10 jumping jacks.

The report after just one tiny, little run on Sunday? Sore legs and ass for starters! BUT, and this was huge for me, my dizziness was basically gone all day Monday and today. That's what I'm talkin' about. That's what used to work, and it worked again despite not getting all hot and sweaty.

So I'll post for a while every other day. It's hugely significant if I can keep this up. Hugely. I would start to exercise last year, and I just couldn't maintain any of it. It was just too hard and too depressing to just keep failing on doing such strenuous things as, oh, a few deep knee bends. I'm definitely past that point so I think I can say I'm most definitely at a better baseline. I'm not healed or not "MSy" by any stretch, but being able to string two exercise sessions with my lower body together is just awesome for me. I hate to say it, but it is sort of a panacea for what ailes me. Anything that can take dizziness away and doesn't say "Antivert" on the bottle is A-Ok by me. That antivert sucks. Sure you might not be dizzy, but what good is that when you can't keep your flippin' eyes open? So I'm off to make dinner (we're having Chinese takeout, mmmmmm) LOL! I'll post again on Thursday whether I could do it or not. And I do know someone with a Flip camera, so a video of me running will be on here soon. It ain't pretty, but hey, I'm OK with that if I can keep it up and keep the dizzy monster away.

Sunday, April 11, 2010

A couple weeks out-still hanging

And I think it's because my old friend dizziness/vertigo slipped back into the picture about a week ago. I'm still feeling good enough to go out and watch live music on a Saturday night until midnight (big stuff for me), but vertigo kind of makes you feel like everything's out of whack. You just want to close your eyes and sit there. It's especially bad for me right now since I have the energy and leg strength to want to do more. It's just that when you're really dizzy, activity makes it worse so you try to 'hang on' and not make yourself dizzy. I mean it takes so little you're even cautious about turning your head too fast. Well my answer to literally everything in the past (especially dizziness) was to "push past it" with physical activity; specifically running. I'd start my jog and I'd get dizzier, but then it would start to abate as the sweat started to pour.


That quit working when I lost my ability to work up enough cardio to even make myself sweat. Not coincidentally, that's when the dizziness really kicked into high gear. So now what do I do? Am I experiencing progression? I don't feel like it, but I can't say no for sure. However, none of this is new stuff. It's just old stuff re-appearing. So what did I do? I tried to run! And I did go about .25 miles doing something that sort of resembled a running stride. It wasn't pretty let me tell you.
Besides the South Park shorts, I probably looked like I was doing the "Thriller" monster dance, but I really don't care. I could do it, keep it up for more than three strides, and it actually did help to abate the dizziness somewhat. It's not 100% gone like it used to when I really could work hard, but maybe, just maybe if I keep it up, I can get to a full mile. .3 is next up. The only thing that really blows about doing stuff like this is that it's not just how strong your legs are that comes into play when you want to start running again when you have MS. It's the leg pain, the foot pain, and everything else that goes on with your legs. If it was simply being weak and not having muscle development, I could push past that. The other stuff at times will make it hard to walk let alone run. So I'm very pleased I could go that far (a whole quarter mile!), but now I really hope in two days my knee won't keep me from continuing. I'd love to be able to make this part of working out. I'll sweat yet this summer from something other than laying in the sun and overheating.

So it's not like the good times just kept on rolling after my last post. I have pretty much stayed right there, but I have to note that the dizziness returning like it has, has got me disappointed and upset. It's not like I can just say "I wonder if my veins re-stenosed?" and just go down to the hospital, get checked and my veins cleaned up. That's the pisser of doing this so early. So glad I did since this all seems to be a process of people starting this, seeing a small number of patients, and then stopping again as they get paranoid since this is not a proven fact yet. Well guess what? Neither are the MS meds. They are far from proven fact in their efficacy as well. Watch this TV special

http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100409/w5_liberation_update_100409/20100410?s_name=W5

it's very telling. I mean people will let us pump ourselves full of, let me say it again, UNPROVEN drugs that are toxic, yet they won't let you open an occluded vein? That's just not right in my opinion as they've been ballooning veins that are stenosed for years and it's extrememely safe. Now the stents I have in are not considered so safe, but people are stopping ballooning because of newspaper articles. This pisses me off because when the MS "wonder drug" (eye roll) Tysabri was first put out, it killed a few people. Patients clamored and it was put back on saying that it was done "for compassionate reasons". Well you can do this surgery for that reason too. The one guy in the video doesn't think you should even be checked, but all you have to know is the loose connection with the efficacy of these drugs to know there's not much of a connection there either.

So it's perplexing that I'm getting dizzy again. BUT A) that's not a new symptom, and B) I flippin' ran a little bit and it helped. So once again, I have to note that with secondary progressive MS there is damage. So I may just be stuck in this kind of limbo where I almost really feel solid, but I can work myself up to feeling pretty bad with not much effort; still exhibiting many MS symptoms. That sucks, but man oh man does it beat progression. I can walk and go out and even run (well it looked almost like running) for a little bit. So that has me on the upside of down and the dropped toast is butter side UP today. I've got a lot to be thankful for, and pragmatically, not much to be sour about when you think about where I could be right now had I not had this "unproven and untested and only supported by anecdotal evidence" procedure done (like I give a rat's ass Dr. Freedman). I'm glad he (the skeptic in the video) has my best interest and safety in mind. However, that argument really only holds water on dangerous procedures and drugs. It doesn't hurt to go in and baloon these veins. Just watch the video and you'll see the vascular surgeon talking about the safety. So him being skeptical would not nearly look so smarmy if he said "I totally do not agree that there is any connection to MS, but if you want to balloon your veins, go ahead, it's your dime". Instead he looks like he has an agenda since it's not dangerous to test and balloon and he is cautioning against people doing it, but he'd give you a prescription for a known dangerous drug in a heartbeat. Oh well, he probably thinks he has to save us dumb masses from our uneducated selves!