Friday, November 27, 2009

And the hits just keep on coming

I guess it's been about a week since my last post. I was scared as hell to actually post that one as you could surmise from my reluctance to do so. I'm not superstitious, but as I've said before, let's cover all the 'hexing' things be they praying or voodoo since doing this in the first place was somewhat of a leap of faith. So I've had another really, really good week. The only bad thing I had happen was that I had one day where I went to work on a day I knew would be high stress with literally an hour and a half of sleep the night before. Preceding this treatment, that would have screwed me up for days. After going to bed that night, I felt absolutely awesome the next day. Recovery time from overdoing it that fast? Not before my surgery.

Since I am now talking about things I would normally have been reluctant to talk about that have changed for the better, I want to talk about one of my two biggies. Dizziness. To a non MS'er who hasn't experienced this, it may sound pretty benign. I remember spinning in circles as a kid just to GET dizzy! And as an adult playing in my friend's annual "beer olympics" (I won't go into details) doing that chug a beer and put your forehead on a ball bat, spin around three times and then run! We actually got many laughs from that event watching people wipe out the woodpile, fall into the pool and generally look like they'd just been shot. But to be almost 24/7 dizzy for the last 3 or 4 years? The word funny isn't even on the map. I used to eat with my eyes closed because I was always just eating to not waste away as I was hardly ever hungry anytime but in the morning before things got stirred up. I still have moments where I run into the wall with one of my shoulders by turning too early (once again, fellow MS'ers know just what I'm talking about), but now I just tell the wall to piss off and move on. It used to be an instant trigger for dizziness. So for a few weeks now, I haven't been dizzy, not even really on the day I worked on an hour and a half of sleep.

I actually even uttered on the forum I frequent ( that if this keeps up, I can almost see myself running again. I can't believe I even uttered those words. After 8 years of MS, that may just be wishful thinking because I know there's damage in me, not just inflammation since I'm progressive, but just to even mention it would decidedly not have happened before. I really don't know if this has stopped my MS or not, and won't for some time. However, I do feel it has, to this point, helped me gain back some lost function. And no it's not just the up and down of RRMS. I'm Secondary progressive. I haven't had a Remittance in symptoms for a loooonnng time.

Another really nice thing is that I don't feel so fragile anymore. I used to feel like I was made of glass. Like to hop down a couple of steps would have just made my knees shatter into a million pieces. I'm feeling more solid, and consequently feel much more stable and balanced and able to stand on both feet with my weight distributed evenly between the two. That feels really "good and strong".

So my next stop is to go to Michigan and get my head examined using MRI-SWI that shows iron build up/deposition. They are doing a study up there (but not taking anyone else at the moment) and I called and offered my head up for exam as someone who has had the procedure done. They wanted to see this as they are just taking "before" pictures right now, and this is a chance to see me freshly after the procedure, and then look at me six months from now to see if the new, good drainage will actually decrease the iron deposition. I sure hope it does as you can't necessarily chelate iron out of your body as it's in every one of your red blood cells. I don't know what the outcome of that may be, but at least we would know if it's getting better or worse over time in terms of excess iron in the brain. It will just provide another piece of, hopefully, valuable data. I decided a while ago that I am a lab rat for sure since I already have been a teaching moment in terms of what can potentially go wrong when you ding the spinal accessory nerve and also what to do if you have what appears to be two jugulars instead of "spider line collateral" veins.

So Happy Thanksgiving everyone. I know what I'm thankful for this year. Being able to engage with my family and friends somewhat boisterously and not worry about getting dizzy for one thing. I mean even laughing and 'getting loud' was all it took to get me dizzy before. But having maybe stopped my progression is another thing to be awesomely thankful for.

Monday, November 16, 2009

All about positive changes....because there aren't any negative ones

OK. So reluctanct to talk about anything positive Lew will finally talk about (dare I do it?) some positive changes that I simply can't ignore. It's that whole "Awakenings" and "Flowers for Algernon" thing and also because I had such a major letdown with the Tovaxin vaccine. That was my fault, but it still sucked. Well as you guys know I can be windier than a bag of assholes, so I am just going to briefly describe some of the things that are going good.

Even though my shoulder is all screwed up AND I'm out of shape because I haven't lifted in a loooong time, I'm able to bench more, curl more and tricep curl more. I'm sure it would be there in military press and pull downs also, but my shoulder is still impeding that. But the most awesome part is in the area of coordination (we're still on the Bowflex here!). I have the leg extension attachment. The leg extensions don't require much coordination. You just sit down and put your legs behind the bar and straighten them out. It's the hamstring curls. Before the surgery I was not even doing that one because of the dexterity involved in laying flat on a slim surface, putting my legs straight out behind me, and getting all situated. I simply could not do it. I have been doing it for about a month now, and I haven't even had to lift my left leg up with my hand! That is major. I could barely lift my left leg with my own muscles past where it needed to be to go up stairs (which have also gotten easier)

Big deal #2. The airports. On my way out to my first procedure I had my Mom and she pushed me everywhere. I could still walk short distances, but no way could I even make it to the gate area of the tiny Dayton airport by myself. I probably could have if I sat and rested halfway. The second time, I absolutely needed my cane and had a pronounced limp. There were times I didn't use it, but on the longer jaunts I did, and I was always limping. The third time I didn't even take my cane. What can I say about that? I mean I didn't limp or anything. I was completely tuckered out after going to my gate in the Houston airport, but I never limped.

Big deal #3. I'm not limping at all anymore. My knee has quit screaming at me, which means my spasticity is going down. This is huge. Now I still can't run a marathon (Ha!), but on my walk Saturday I "jogged" very slowly for about the last 100 yards (It was in my boots to; which I'm sure looked VERY cool). I just can't deny that things are changing. I've never, ever been superstitious, but I don't want to jinx myself! Not with this. No chances, but it's been a while now that these things have been happening. I'm sure my host in California, Kelly, can attest to the difference in me from the first to the last trip. Man my buddy Doug married a cool chick. I love you Kelly!

I still definitely have MS symptoms. Heat still affects me adversely. I still get dizzy and my vision still gets foggy, but I recover so much faster it's not even funny. I don't know if this is the answer or not; especially since I've been progressive for a while and there is pre-existing damage. But it's a large part of it. Of that I have no doubt now. When I'm at rest, and don't have to pee :-), I almost feel normal. This is all so cool I don't even know where to begin. I've had this shit so long now that I don't even dream that I'm healthy anymore. This is going to be a short update with hopefully many more to come. I'm hitting the PT as hard as my shoulder will let me, and we just joined a gym so I could try out all the different equipment before I choose a piece to buy for the home. I was dead set on an elliptical, but thought I'd better give it a shot to see if I could handle it. We're going tomorrow and instead of being intimidated, I'm elated! I haven't felt this good in a while. I worked out tonight after a full day of work. Looking back just a few short months, that would have never happened; it was only on the weekends, and even then I absolutely dreaded it.

Until next time with hopefully more to tell, but I've been working on the "A" word, so even if I'm stuck right here I'll be ok. But somehow I think better things are to come. That, in and of itself, is a huge step for me. To look to the future, just that, to think to the future.

Saturday, November 7, 2009

The "A" word

I've come to a profound conclusion in the last few days. Even though I feel like I deal with this pretty well most of the time, and always outwardly so, I have done an awful job of acceptance. This is a tough one. Sure I know I need to 'accept' I have MS. I thought I already had. But it was something different I now believe. I think all I've done is gone through the process of acknowledgement. Just enough to keep me out of destructive denial. I think denial can be constructive and destructive, and acknowledging it keeps me out of destructive denial. So what does acceptance really mean to someone whose life has been so drastically altered? I suppose there is a slight bit of 'giving in' that needs to be done, and that's not something I've ever been prepared to do. I've never given an inch to this disease, and therein lies the problem. Allow me to explain. Paragraph break coming Jamie (Ha! you know I love you brother!)

With every techique, every pill, every coping mechanism comes a big price with MS. When someone healthy gets sick, it's not even a question of taking your pills, or staying away from your ciggies, or something like that. And it's because it will pass. So the dynamic I've created has always left me very resistant to do anything since with MS it could very well mean it's for the rest of your life. Whatever you have to do to shit properly, you have to do for the rest of your life. Whatever you have to do to sleep properly, you have to do for the rest of your life, and so on and so on.... So I've taken the high road and barely take anything to cope with my symptoms for that very reason; because it will be forever. We all know that 99% of drugs work in the short term until you get used to them. Sometimes you build up a tolerance, and sometimes they simply cease working. So I've chosen to do nothing. I mean if I took a laxative every day, it wouldn't be long before they wouldn't work that one time when I REALLY needed one to work. If I start taking Ambien to sleep, eventually I'll build up a tolerance and it won't work anymore. So I've always taken the natural route which has taken me so far. Hey, there really are messed up things in my body and they really don't work properly and all the natural stuff in the world isn't going to make it work properly. And then it spills over into the rest of my symptoms like walking and peeing and things like that. Well I've always been able to just gut it out. If I have to walk a 1/4 mile, I know I'll be absolutely trashed by the end of it. But then do you know what I do? I get all bummed about it and dissappointed and all the other things that happen when you realize you can't do what you set out to do. And since I've never accepted things, it's always like it's the first time I couldn't do it and the dissappointment is also like the first time. So I'm coming from a place where I still percieve myself as being able to do anything, and then when it's painfully clear that I can't, I feel like I did the first time I couldn't walk somewhere, and this happens daily. Eventually I'm going to drive myself nuts.

So I need to go into things from the perspective that I have these limits. Even if we have stopped the onslaught of progression, I'm still pretty severely hampered by the damage that's already there. Why do I want to set myself up for a fall on a daily basis? Just stubborn I guess. I mean to go through the same level of disappointment every day is starting to wear on me. It's like Groundhog day and I need to finally realize what actually IS happening to me and live within my limits. So coming from a healthy perspective, I'm going to get trashed by the way it turns out every day. But if I accept the fact that I do have limits and DO ALL I CAN WITHIN THAT FRAMEWORK then maybe I can get on with the business of being happy with my life again. I need that, it's just the way I'm put together. I know now that I will never find it just hoping that today will be different from yesterday. I mean, christ, this has been going on for a while, yet I still feel the same way every time I can't walk 2 miles. For God's sake I haven't been able to do that for over 2 years! So accept it already. Did the CCSVI procedure 'get it'? I don't know, but I think it's a huge part of the puzzle that is MS. Maybe there's more, and maybe I will just need to wait longer to start feeling like I don't have limits. BUT I need to accept the fact that there may always be limits, even if the procedure did quit the advancement. Like when you get injured. I think that's maybe part of it too. I mean it hasn't taken away my entire ability to walk. So I go as far as I can, and usually a little farther. It's just that when the pain, weakness and unsteadiness happen, my brain needs to quit acting like it's a surprise; it decidedly is not.

So the other day I'm at a huge factory in Dayton. The walk from the handicap spot to where I need to go is literally about 1/4 mile away just to get in the door. And then after I get to it, we are talking a 2.5 million square foot plant. I will need to probably walk another 1/4 mile to see what I have to see, and then of course retrace it all to get back. Why this sucks is the whole time all I'm thinking of is "lord I hope I don't have to pee" because #1 I'd never make it and #2 the BR is probably way off the beaten path anyway in the factory and that's MORE walking. So how does acceptance play into this? Well if I accepted my limitations I'd use the devices and pills that make that type of thing easier. I mean if I had used a texas cath (external) I wouldn't have to worry about that aspect and I could have stayed more engaged in what I was there for. So instead of trusting luck and taking a chance, which leads to much more stress (not to mention me having to pee on a tree on the way out), why don't I just accept where I'm at and prepare accordingly? I mean dehydrating yourself is for sure not the answer, but that's how I've been doing it. But if I use the external cath. then that means I'm giving in. Well maybe to a point, but I need to start setting myself up for success, not possible failure, which is what I've been doing.

This is going to be hard. I mean I guess I always thought once I give in, my 'life' as I know it is over. I won't be able to stay socially engaged and all kinds of stuff. Well that would be true if I never take advantage of an "aid" (be it drug or device). But if I use these tools, then I believe it's going to surprise me. I mean they are there for a reason, right? So that's going to have to be the mindset I have to create. I have to go in knowing that "this is what I can do, if there's more, I need to prepare". That will be more work, but proper pre planning in everything in life always results in a better outcome. And I don't know if can keep living with the constant dissapointment that, in my mind anyway, I should have gotten used to by now. I mean don't we all have to adapt to what hand we're dealt? I haven't been and have still been coming from the place that I am really capable of more than I am. Will this lead to a lower self image? I don't know, but I already do know what NOT accepting it does.

So now I know why I've never been creative. Well partly. I've led a pretty easy life. Things always went my way in the end and things have always been easier for me than most. So even though I wanted to be a blues guitarist (lol), I never had enough blues. Even though I wanted to be a writer, my soul is just not that tortured. So now it is and lo and behold I have cathartic moments almost non stop. So that's why I write this damn blog. I almost feel like I'd explode if I didn't. Maybe that's how Stevie Ray Vaughn felt before he played like he was channeling the Gods. Maybe that's why everyone creative seems to have some 'dark place' that they come from. Then again, maybe I'm all wet and those people are/were just creative! Hell I don't know. All I know is that it's not OK with me to feel like I'm getting blue. I have to stave it off at the pass at every turn. Like I said, it's just how I'm put together. But realizing that I need to accept rather than just acknowledge the fact that I have MS is something I need to go about the business of doing post haste. I have literally been setting myself up for disappointment. No one to blame but me. I mean I've already spoken of how I'm starting to get used to the state I'm in and how that's a good thing as it's not a constant downhill slide. Now I need to go about the business of realizing that maybe my miracle is just making it stop and if I get better, well that would be something.

Wednesday, November 4, 2009

Holding pattern and going back to Cali. part tres

Here we are at basically 4 months since this odyssey all started. Boy does it seem like longer. That is a very good thing as when you are in the throes of progression, time just melts away and you end up looking back and saying "wha' happened?". So I'm still pretty much in a holding pattern as far as my own perception goes. I had some transient leg weakness in the last couple of weeks, but that has abated. I have started exercising and going to physical therapy, so it could be that as much as anything. But I ain't gettin' worse! As I've said many, many times, that's huge, ginormous, stupendous and every other positive adjective you want to throw at it. I'm starting to get used to where I'm at and it's a very, very good feeling to have limits that aren't always in major flux. I know what is going to make me hurt and then the decision about whether to do it is a much more personal choice. When you don't know where you're at, you just are always doing too much, getting too exhausted, pissing your pants, all kinds of shite. It's so nice to have an expected outcome to what you choose to do. It's not only disconcerting when it's the other way, but it's also very deflating to your ego. It's hard to explain, but all you MS'ers out there reading this know exactly what I'm talking about. I never thought in a million years that at the age of 43 I would have to be 'rationing' my effort. But now I can pretty much get done what I want to within reason since I can just spread it out and pace myself. When you don't know where your limits are, you are constantly not getting anything near the amount of stuff you want to get done as you go to exhaustion all the time and have to keep putting things out. Now I'm not talking about raking my entire yards' worth of leaves or things like that. But rather doing things at work, doing housework, that kind of stuff. It's so nice to know what to expect. You know it's about the time where you're going to trip your trigger. You just stop for a bit, have a cold drink and a break, and start again. When you go too far, many times you won't get the opportunity until the next day.

So I'm going back to California for the third time. Check up on round 2 of the procedure. Here's where it gets good. If something has to be done again, I can do it just up I-75! Only four short hours away from here by car is where one of the docs who is getting into this is doing his thing. You can check out the info. at There is a doctor up there who is doing a type of MRI that I may have alluded to before called SWI or susceptibility weighted imaging. Don't know what the hell that mouthful means, but he can actually see the areas where there is increased iron deposition from years of reflux of de-oxygenated blood. On a whim I decided to shoot them an email off the generic email on their site to see if they could do my check ups. Well they called me the same day and I'm going to go up there when I get back and they are going to do the MRI with SWI. That's very intriguing to me as I think this doctor (Dr. Haacke) may be really on to something with the whole iron thing. Now the next question is can we do anything about the damage? Either the already inflicted damage done, or the flip side of if we remove it will things heal? Those are burning questions for me. As I've stated before, being secondary progressive means my disease is no longer an inflammatory process, but rather a degenerative one. So at the age of 43 (your nervous system really slows it's ability to heal after about 30-35 I hear) I'd like to get anything that could potentially damage my brain further the hell out of there. Also I'd like to give it a chance to heal to the best of it's ability, and I don't know if that's possible with all those macrophages in there. I probably got that term wrong, but there are things that do damage and things that clean up the mess, and they are not in there at the same time. I think the bad guys are the macrophages, so here we are.

So going forward, a drive to Michigan for the day is a hell of a lot less daunting than flying to California from Ohio. Plus it potentially opens up the door for people on this side of the Mississippi since Dr. Haacke is teaming up with an interventional radiologist at Wayne State U. I don't know when or if they will be doing the interventions like they are at Stanford, but I do know that they want to get a look at my noggin since I've actually had the procedure done. I'm pretty jazzed about the prospect of furthering Dr. Haacke's understanding of what he's looking at, as well as being able to get a picture now to compare to a picture later and see if things are headed in the right direction. Right now they're only doing the imaging to back up the theory of "everyone with MS has this" I believe and it will maybe get them funding to proceed with a trial and get published results. Well as you guys know, my shoulder took a big hit and I spent literally all day doing computer stuff at work and right now it is just jonesing from typing all day so this will be a short post. I leave on Tuesday of next week and I'm sure I'll update from out there like I usually do. So everyone send good juju that my last round took really well like the first one did and all I go out there for is to get in the tube and talk to the doctor. That would be very cool as I'm going by myself this time. Now that is a big change from 4 months ago when I had to have my mom push me in a chair and use my cane when I had to walk. That's a big change. Like I've always said, it's like kids and growing I think. Others notice more of a difference in me than I do in myself and it's all good. That doesn't suck.