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.
Monday, November 16, 2009
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.
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 http://ms-mri.com/. 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.
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 http://ms-mri.com/. 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.
Saturday, October 17, 2009
Waxing Philosophical
Here we are and I haven't updated this thing in a couple of weeks. I'd hoped to be able to write of just constant improvement every week, but alas it seems that my expectations were a little lofty due to the progressive nature of my MS. What it comes down to is that I'm in kind of a holding pattern. I don't feel a lot better or a lot worse; which as I've stated before is a very, very positive thing since I feel if I wouldn't have done this I'd be writing a blog of unabated negative progression and how everything keeps getting worse. That's what you're up against here. You think to yourself "I'll do THIS if it starts up". But then you realize once you're progressive (and really to me during the whole course since it still plods forward despite the drugs) that there are some things you can do with diet and exercise; if you're able to exercise strenuously enough to make a difference. And that's your conundrum. You know what will help, but you aren't physically able to do it. So being in a holding pattern is A-Ok with me right now. There have been some improvements in energy level and things of that nature, but I'm used to them now and that initial improvement "jolt" was noticeable and my hope is that it's just so slow that it's hard to notice right now.
So that brings me to what I thought I'd write about this morning. What this does and how I've dealt with it. Even when you're disease if relapsing and remitting (RR), you still are progressing. In my case it really wasn't noticeable for about 4 or 5 years, but I obviously progressed during that time as my abilities started to go. But there is still a lot you can do, but what you CHOOSE to do becomes the mind fuck. You see there comes a time when you start to have to make decisions about how you are going to use your energy. Before all of this I would go to work, come home and work out and still do whatever the hell I wanted after dinner. And no saying "but you're in your 40's now, that was going to slow down anyway". That is true, but I was one of those guys in their 40's who had literally never been out of fantastic shape since high school. I would still be living like that for quite a while I know for sure. Work on the house, work in the yard, fix something, read, whatever. It was my choice and there were no doors closed; whichever one I chose I just walked through and did. Where I'm at now really is a weird spot. Let's take today for instance. A dear friend of ours daughter is getting married. That's a big event for someone with weak legs, a weak bladder and bad balance. So I need my energy to do that. But I also have to try and take care of myself. Which means taking a walk or doing some other type of exercise that I'm able to do. Well the thing is, I don't have enough in the tank to do both. So a decision has to be made. Take care of yourself, or meet your 'obligations'. In a vacuum, the choice is easy, you must take care of yourself as the #1 priority. But life is not lived in a vacuum. Life is about relationships, and if you don't engage in those relationships, they wither. Not that people just will turn their backs, but rather that your name just starts to not come up due to how many times you've made the choice to use your energy solely to take care of your issues. And why are you taking care of your issues? So that you can live your life! There's the rub; which do you do? It's definitely a balancing act for sure, it's just the state of my life and I'm doing it the best I can. But there's just plenty that I'd choose to do that I'm unable to do because of this. And people understand, but not really because I don't appear outwardly disabled until I get tired and the pain ratchets up. I don't suffer from fatigue, so it's really not just straight up energy, but it's that my legs will just get so wobbly they won't work anymore and I get dysfunctional dizzy. Then I can't make it to the bathroom and that's what I mean about my energy. It's more effort level that can't be achieved.
It's like the tipping point has been reached where taking care of all my bullshit has gone over into the 51% of my waking life arena and taking care of myself takes so much effort that I don't have the effort to give to "live life". That's when it sucks. I can take a lot. A whole lot. It's not like this happened overnight so it definitely doesn't feel like someone who had a major nervous system injury where their ability is gone in an instant. My heart goes out to anyone who deals with that with grace. Those people are who we should all idolize. That shit is hard. But I still can walk, just not very far, I can still hold my water, just not very long, and I can still stay upright with balance, but not after much effort. So it comes down to life has gotten to the point where I can do a little, but my family is still doing a lot. When I try and keep up is when it's just very difficult. I'm to the point now where I really can't. That's why I have flown across the country twice (still have a trip in November) and have three pieces of Nickel in my veins. I just hope this works.
Some of you are probably thinking "well it doesn't sound like it's worked". That's misleading and I've come to understand it better and that understanding has come from my shoulder and what's going on with it. I'm rehabbing that dude and it's not going bad, but all I'm doing right now is keeping it from atrophying; trying to keep the range of motion so when the nerve heals I can get busy strengthening it back up. Here's my take on why this works so well on people who are RR and why it's a long time coming for us progressive folks. When you're RR, it's all inflammatory. So the surgery takes the deoxyginated, iron filled, refluxed blood and takes aways the source of the inflammation. Well since the nerves aren't functioning correctly due to the inflammation, you take the inflammation away and whatever the nerve controlled starts functioning again. Like anything you'd take an anti-inflammatory for, take it away, pain is gone. Same concept here, take it away and it works again. Well for someone who is progressive, the disease isn't inflammatory anymore. That's probably why steroids (massive anti inflammatories) work so well for RR attacks and not so much for progression once you're not RR anymore. So now we've theoretically removed the source of the damage. Only in this case, there's no anti-inflammatory response. And here's what I learned about my shoulder; nerves take about 1" per month to heal. So my shoulder could stay screwed up for about 13 months since that's the measured distance from where my nerve got banged to where the dysfunction is. In my mind anyway, the same thing holds true here. If we indeed turned of the damage, now it's going to take a long time to heal. Think about the distance from a lesion in your brain to whatever is affected. So that is why, for me and all the other progressive patients who've had this done, it's going to take some serious time. So we have to keep moving as much as we can to stave of atrophy and wasting. I'm already down to 155 pounds from a normal of around 170. And my waist is 2 inches bigger! It's like rapidly accelerated aging.
So while this is where all this progression is taking you from healthy to where you're at, you stay busy, you try to keep working and living and doing everything you ever did. For a while you succeed. In my case for a good long while (well 4-5 years anyway) and then when the stay distracted/denial thing just doesn't work because you just can't 'push through it' anymore, it comes down on you like a ton of bricks. That's when you go "Oh shit" and finally realize that the life you'd thought you'd set yourself up for is out of your reach. Maybe the home you live in is not liveable for you anymore, all kinds of things happen all at once. That's the stage I had gotten to when I decided to do this.
So this make seem a little like a negative "I don't think it's working" post. But it's not. I'm just starting to let down some of the walls I've erected to stay sane through all of this. Trying to get to a place of calm acceptance because I believe it's painfully clear I am decidedly not going to go "back to normal" if this truly does turn off the damage. And one of the ways to do that for me is to understand what's going on so I can have a clearer understanding of what to expect so as not to get too let down. There is just some stuff where the nerves are probably dead, or close to it, and may never get back to their full potential. When you pass the age of 35 or so, your brain and nervous system lose alot of what's called plasticity, or ability to heal.
So hear I sit, writing this post instead of going to try to workout and take a walk because I'm going to the wedding tonight. I've made the decision that's what I'm going to use this 24 hours worth of effort for. Mon. - Fri. it's work. That decision is easy. It's the weekends that are hard because that's when you DO WHAT YOU WANT TO DO (read: live life), or try anyway. Sheesh, I've had 3 wedding in the last 4 weekends. It's like when we were about 25 and we were all getting married. Now it's our damn kids! Speaking of kids, I want to talk about the dynamic going on with mine. When I was healthy, I was a pretty aggressive life liver. And I wanted my daughter to "do it right", which meant to me that she was supposed to be like me. So I tried to make sure she was as competitive as I was, as socially engaged as I was, all of it. That was SORT of working. Well now I've just had to loosen my grip. I physically don't have the effort to live her life and mine. So I let go; a lot. And lo and behold, she is absolutely blossoming. She is becoming who SHE is going to be. Not who I want her to be. And it's beautiful. She is so fucking beautiful and talented it's not even funny. Everything I was trying to MAKE her do well she is doing so much better now that it's her that's providing the motivation. Sports, social life, everything. So my advice to everyone who wants a pleasant teenager is this: do everything you can to control everything, and then let go at about the age of 9!! That's obviously off the cuff, but it's worked for us. She is exceeding everything I ever thought she was about and it's because I'm letting her learn her own lessons. We parents of this generation are often times like snow plows for our kids. Our kids need to plow their own snow. I could go off on this for about 10,000 more words, but I won't. It really sunk home that I was doing the right thing when I was with my host family at Stanford. They seem to have gotten that memo out of the gate, and it's an absolute joy to be around their family. They have four kids under the age of 8 and they are all just so unique and you can just tell that THEIR personality is developing on it's own. No parent clones in that family. Just kids becoming who they're going to become and who will more than likely live up to their potential. Isn't that what our job is anyway? Not to knock down all the hurdles they have to cross, but rather to support them if they need help getting over it in their own way?
So I'm done waxing. I'm feeling strangely serene here lately because I think I've accepted the fact that just because I had this procedure doesn't mean I'm going to wake up tomorrow without MS. However, I do think this is the biggest part of the puzzle to MS. It might not be all of it, but I suppose it might. Since I'm 'dialed in' to what's going on with this CCSVI model, I can tell you that it is getting some serious traction. I'm going to put two links of news stories that have come out of SUNY (State University of New York) just in the last week. I think that it's, at least in the world of MS, going to shake the ground.
Until next time
http://www.wivb.com/dpp/news/health/UB_leads_way_in_battle_against_MS_20091014
That's the local news story link. There's a press release somewhere of just text, but I can't find it! It comes off sounding much more "professorial", but since I can't find it just trust me that this is getting a foothold, i.e., can't be ignored by the MS community (who is very heavily funded by the drug makers).
So that brings me to what I thought I'd write about this morning. What this does and how I've dealt with it. Even when you're disease if relapsing and remitting (RR), you still are progressing. In my case it really wasn't noticeable for about 4 or 5 years, but I obviously progressed during that time as my abilities started to go. But there is still a lot you can do, but what you CHOOSE to do becomes the mind fuck. You see there comes a time when you start to have to make decisions about how you are going to use your energy. Before all of this I would go to work, come home and work out and still do whatever the hell I wanted after dinner. And no saying "but you're in your 40's now, that was going to slow down anyway". That is true, but I was one of those guys in their 40's who had literally never been out of fantastic shape since high school. I would still be living like that for quite a while I know for sure. Work on the house, work in the yard, fix something, read, whatever. It was my choice and there were no doors closed; whichever one I chose I just walked through and did. Where I'm at now really is a weird spot. Let's take today for instance. A dear friend of ours daughter is getting married. That's a big event for someone with weak legs, a weak bladder and bad balance. So I need my energy to do that. But I also have to try and take care of myself. Which means taking a walk or doing some other type of exercise that I'm able to do. Well the thing is, I don't have enough in the tank to do both. So a decision has to be made. Take care of yourself, or meet your 'obligations'. In a vacuum, the choice is easy, you must take care of yourself as the #1 priority. But life is not lived in a vacuum. Life is about relationships, and if you don't engage in those relationships, they wither. Not that people just will turn their backs, but rather that your name just starts to not come up due to how many times you've made the choice to use your energy solely to take care of your issues. And why are you taking care of your issues? So that you can live your life! There's the rub; which do you do? It's definitely a balancing act for sure, it's just the state of my life and I'm doing it the best I can. But there's just plenty that I'd choose to do that I'm unable to do because of this. And people understand, but not really because I don't appear outwardly disabled until I get tired and the pain ratchets up. I don't suffer from fatigue, so it's really not just straight up energy, but it's that my legs will just get so wobbly they won't work anymore and I get dysfunctional dizzy. Then I can't make it to the bathroom and that's what I mean about my energy. It's more effort level that can't be achieved.
It's like the tipping point has been reached where taking care of all my bullshit has gone over into the 51% of my waking life arena and taking care of myself takes so much effort that I don't have the effort to give to "live life". That's when it sucks. I can take a lot. A whole lot. It's not like this happened overnight so it definitely doesn't feel like someone who had a major nervous system injury where their ability is gone in an instant. My heart goes out to anyone who deals with that with grace. Those people are who we should all idolize. That shit is hard. But I still can walk, just not very far, I can still hold my water, just not very long, and I can still stay upright with balance, but not after much effort. So it comes down to life has gotten to the point where I can do a little, but my family is still doing a lot. When I try and keep up is when it's just very difficult. I'm to the point now where I really can't. That's why I have flown across the country twice (still have a trip in November) and have three pieces of Nickel in my veins. I just hope this works.
Some of you are probably thinking "well it doesn't sound like it's worked". That's misleading and I've come to understand it better and that understanding has come from my shoulder and what's going on with it. I'm rehabbing that dude and it's not going bad, but all I'm doing right now is keeping it from atrophying; trying to keep the range of motion so when the nerve heals I can get busy strengthening it back up. Here's my take on why this works so well on people who are RR and why it's a long time coming for us progressive folks. When you're RR, it's all inflammatory. So the surgery takes the deoxyginated, iron filled, refluxed blood and takes aways the source of the inflammation. Well since the nerves aren't functioning correctly due to the inflammation, you take the inflammation away and whatever the nerve controlled starts functioning again. Like anything you'd take an anti-inflammatory for, take it away, pain is gone. Same concept here, take it away and it works again. Well for someone who is progressive, the disease isn't inflammatory anymore. That's probably why steroids (massive anti inflammatories) work so well for RR attacks and not so much for progression once you're not RR anymore. So now we've theoretically removed the source of the damage. Only in this case, there's no anti-inflammatory response. And here's what I learned about my shoulder; nerves take about 1" per month to heal. So my shoulder could stay screwed up for about 13 months since that's the measured distance from where my nerve got banged to where the dysfunction is. In my mind anyway, the same thing holds true here. If we indeed turned of the damage, now it's going to take a long time to heal. Think about the distance from a lesion in your brain to whatever is affected. So that is why, for me and all the other progressive patients who've had this done, it's going to take some serious time. So we have to keep moving as much as we can to stave of atrophy and wasting. I'm already down to 155 pounds from a normal of around 170. And my waist is 2 inches bigger! It's like rapidly accelerated aging.
So while this is where all this progression is taking you from healthy to where you're at, you stay busy, you try to keep working and living and doing everything you ever did. For a while you succeed. In my case for a good long while (well 4-5 years anyway) and then when the stay distracted/denial thing just doesn't work because you just can't 'push through it' anymore, it comes down on you like a ton of bricks. That's when you go "Oh shit" and finally realize that the life you'd thought you'd set yourself up for is out of your reach. Maybe the home you live in is not liveable for you anymore, all kinds of things happen all at once. That's the stage I had gotten to when I decided to do this.
So this make seem a little like a negative "I don't think it's working" post. But it's not. I'm just starting to let down some of the walls I've erected to stay sane through all of this. Trying to get to a place of calm acceptance because I believe it's painfully clear I am decidedly not going to go "back to normal" if this truly does turn off the damage. And one of the ways to do that for me is to understand what's going on so I can have a clearer understanding of what to expect so as not to get too let down. There is just some stuff where the nerves are probably dead, or close to it, and may never get back to their full potential. When you pass the age of 35 or so, your brain and nervous system lose alot of what's called plasticity, or ability to heal.
So hear I sit, writing this post instead of going to try to workout and take a walk because I'm going to the wedding tonight. I've made the decision that's what I'm going to use this 24 hours worth of effort for. Mon. - Fri. it's work. That decision is easy. It's the weekends that are hard because that's when you DO WHAT YOU WANT TO DO (read: live life), or try anyway. Sheesh, I've had 3 wedding in the last 4 weekends. It's like when we were about 25 and we were all getting married. Now it's our damn kids! Speaking of kids, I want to talk about the dynamic going on with mine. When I was healthy, I was a pretty aggressive life liver. And I wanted my daughter to "do it right", which meant to me that she was supposed to be like me. So I tried to make sure she was as competitive as I was, as socially engaged as I was, all of it. That was SORT of working. Well now I've just had to loosen my grip. I physically don't have the effort to live her life and mine. So I let go; a lot. And lo and behold, she is absolutely blossoming. She is becoming who SHE is going to be. Not who I want her to be. And it's beautiful. She is so fucking beautiful and talented it's not even funny. Everything I was trying to MAKE her do well she is doing so much better now that it's her that's providing the motivation. Sports, social life, everything. So my advice to everyone who wants a pleasant teenager is this: do everything you can to control everything, and then let go at about the age of 9!! That's obviously off the cuff, but it's worked for us. She is exceeding everything I ever thought she was about and it's because I'm letting her learn her own lessons. We parents of this generation are often times like snow plows for our kids. Our kids need to plow their own snow. I could go off on this for about 10,000 more words, but I won't. It really sunk home that I was doing the right thing when I was with my host family at Stanford. They seem to have gotten that memo out of the gate, and it's an absolute joy to be around their family. They have four kids under the age of 8 and they are all just so unique and you can just tell that THEIR personality is developing on it's own. No parent clones in that family. Just kids becoming who they're going to become and who will more than likely live up to their potential. Isn't that what our job is anyway? Not to knock down all the hurdles they have to cross, but rather to support them if they need help getting over it in their own way?
So I'm done waxing. I'm feeling strangely serene here lately because I think I've accepted the fact that just because I had this procedure doesn't mean I'm going to wake up tomorrow without MS. However, I do think this is the biggest part of the puzzle to MS. It might not be all of it, but I suppose it might. Since I'm 'dialed in' to what's going on with this CCSVI model, I can tell you that it is getting some serious traction. I'm going to put two links of news stories that have come out of SUNY (State University of New York) just in the last week. I think that it's, at least in the world of MS, going to shake the ground.
Until next time
http://www.wivb.com/dpp/news/health/UB_leads_way_in_battle_against_MS_20091014
That's the local news story link. There's a press release somewhere of just text, but I can't find it! It comes off sounding much more "professorial", but since I can't find it just trust me that this is getting a foothold, i.e., can't be ignored by the MS community (who is very heavily funded by the drug makers).
Saturday, October 3, 2009
This week's update
So I finally got to the physatrist concerning my shoulder. No surprise that the spinal acc. nerve is pretty badly damaged. Now I know exactly what it is and will just have to wait until my next appointment to see whether or not it's healing. It takes a good while for nerves to heal, they told me 1 inch per month and I'm damaged over about 13 inches of nerve, so this could be a long process. Knowing that, I will now stop talking about it except to update in a few months when they tell me it's healing or it's not. I have a good suspicion it is probably the former because the pain I've felt I believe I've brought on from over use. So we wait now. On to the better part of the update.
These updates have become a bit anti climactic since everything is changing at a snail's pace. You all know my expectations (where they came from I don't know since I know my MS is progressive and everyone who has immediate benefits is relapsing) were very wishful thinking for something quick. Well I think some things are changing for the better. The routine based things are the ones I am telling the most difference in. Walking from my office to the assembly department at work for instance. Or how I do at one of Sarah's soccer games. Those things that I do religiously and kind of 'mark' in my head how I've been doing. One thing MS has really put a crimp in for me is the fact that I am a stander. Before all of this I would even watch TV standing up a good deal of the time. I'd put my beverage on the mantle and stand there and watch TV so I could go do something during breaks. I would also always stand at my daughter's games. I haven't been able to for about two years. Well this morning I stood for both halves. I did sit during the ten minute halftime. But not only did I do it, I did it with very little pain, and no tingling. That was very good and it was also a bit of a surprise. I wanted to stand for a little bit until my legs really started tingling; my signal to sit down. It never started. AND this was the field where the bathroom is probably 3 soccer fields away. I made the trip twice with no limp. I was so taken aback. I mean you just sit there (stand there today!) and wait. You wait for your legs to start up their mess, you wait for your eyes to go foggy, you wait for dizziness and you wait for the spaciness and brain fog. It just hasn't been coming unless I really over do it.
And the walks up to the assembly dept. There have been times where I got all the way back to my office and realized I forgot a piece of data and had to go back up there. There have been times when that has almost brought me to tears of frustration. I mean after all I'm only talking about a little walking. It has gotten way better in terms of how often I can do it during the day and how it doesn't make me so screwed up with all the other stuff. The only thing that I really can't tell any significant improvement in is my bladder. It is still the same as it has always been through this. My balance is still pretty off too, but I think that's coming around. I really want some relief in my bladder, but if my legs keep getting better, the bladder isn't so life altering as I can make so many more trips with out making myself just have to stop. So all in all it's been a great week. I'm just talking MS here since my shoulder now goes into the category of injury. I really don't think I've had a headache. Man that's nice. This second round of surgery, I believe, has really opened things up (literally). I just seem to be on much more solid ground. All you MS'ers understand that innately. Being able to stand with a balanced posture, chest out and also GOOD posture, is very cool. It raises my self image alot; makes you feel like you're not so sick if you will. All of this stuff is really good news. Now with MS also comes the up and down nature of the whole thing. You feel good for a bit, then you go back. After years of that it just beats you down on all fronts. My great hope is that now I don't yo-yo like that and can start to feel like I know who I am physically and can stop dwelling on all the shite that is always negative.
So all in all I'm happy about all of it this week. I hope next week I can raise the bar a little higher. I'm supposed to get my physical therapy regimen next week and I am of the opinion that it's time to see if I can get into a little bit of shape. If I can, then I'll really be feeling good and knowing that this surgery is for real. Man, I can hardly let myself go there.
I really hope this keeps up. As it is with MS, you have to treat all your upticks as temporary. Hopefully I won't anymore, but that's a big hope.
These updates have become a bit anti climactic since everything is changing at a snail's pace. You all know my expectations (where they came from I don't know since I know my MS is progressive and everyone who has immediate benefits is relapsing) were very wishful thinking for something quick. Well I think some things are changing for the better. The routine based things are the ones I am telling the most difference in. Walking from my office to the assembly department at work for instance. Or how I do at one of Sarah's soccer games. Those things that I do religiously and kind of 'mark' in my head how I've been doing. One thing MS has really put a crimp in for me is the fact that I am a stander. Before all of this I would even watch TV standing up a good deal of the time. I'd put my beverage on the mantle and stand there and watch TV so I could go do something during breaks. I would also always stand at my daughter's games. I haven't been able to for about two years. Well this morning I stood for both halves. I did sit during the ten minute halftime. But not only did I do it, I did it with very little pain, and no tingling. That was very good and it was also a bit of a surprise. I wanted to stand for a little bit until my legs really started tingling; my signal to sit down. It never started. AND this was the field where the bathroom is probably 3 soccer fields away. I made the trip twice with no limp. I was so taken aback. I mean you just sit there (stand there today!) and wait. You wait for your legs to start up their mess, you wait for your eyes to go foggy, you wait for dizziness and you wait for the spaciness and brain fog. It just hasn't been coming unless I really over do it.
And the walks up to the assembly dept. There have been times where I got all the way back to my office and realized I forgot a piece of data and had to go back up there. There have been times when that has almost brought me to tears of frustration. I mean after all I'm only talking about a little walking. It has gotten way better in terms of how often I can do it during the day and how it doesn't make me so screwed up with all the other stuff. The only thing that I really can't tell any significant improvement in is my bladder. It is still the same as it has always been through this. My balance is still pretty off too, but I think that's coming around. I really want some relief in my bladder, but if my legs keep getting better, the bladder isn't so life altering as I can make so many more trips with out making myself just have to stop. So all in all it's been a great week. I'm just talking MS here since my shoulder now goes into the category of injury. I really don't think I've had a headache. Man that's nice. This second round of surgery, I believe, has really opened things up (literally). I just seem to be on much more solid ground. All you MS'ers understand that innately. Being able to stand with a balanced posture, chest out and also GOOD posture, is very cool. It raises my self image alot; makes you feel like you're not so sick if you will. All of this stuff is really good news. Now with MS also comes the up and down nature of the whole thing. You feel good for a bit, then you go back. After years of that it just beats you down on all fronts. My great hope is that now I don't yo-yo like that and can start to feel like I know who I am physically and can stop dwelling on all the shite that is always negative.
So all in all I'm happy about all of it this week. I hope next week I can raise the bar a little higher. I'm supposed to get my physical therapy regimen next week and I am of the opinion that it's time to see if I can get into a little bit of shape. If I can, then I'll really be feeling good and knowing that this surgery is for real. Man, I can hardly let myself go there.
I really hope this keeps up. As it is with MS, you have to treat all your upticks as temporary. Hopefully I won't anymore, but that's a big hope.
Friday, September 25, 2009
My stupid shoulder
Well I wish someone was here to take a pic. of my shoulder. You've all heard me bitchin' about it and it's not getting any better. My friend Marie has it figured out as she has the same thing. She was patient #2 and is an RN and good researcher, and she figured out that it's a pinched spinal accessory nerve. Her, I and another patient all have had this so it seems like it's a potential complication that wasn't accounted for (if it even could be since it's endovascular) so I told Dr. Dake about it so that he's on the 'lookout' for it, but as I said, I don't know that he can do anything about it. The hole in the skull that the carotid, the jugular and that nerve go through does not have a lot of clearance and that's probably where it's pinched. The sheath that they're in is also tight and that could be it as well, but I think that would have abated right now and it being pinched against bone seems more plausible to me anyway. I hope I haven't bored you all with those specifics before. That's one thing about these postings; it's almost impossible to remember everything you've already written about, and my memory sucks so please bear with me. So it's been a week and I really not only feel obligated to post on progress, but I also don't want it to get away from me. The good thing about that is I didn't even realize that it had been a week. The reason that's good is that I've been busy at work, and the time slipping away as it pertains to something with MS is a good thing as it indicates I may be through over obsessing about it so much. Going into these uncharted waters really creates a dynamic where you are constantly thinking about what's going on with your health. When you're not doing well, that happens also as every head movement, every leg movement and even every eye movement are all a constant reminder that you are not doing well. Hey, I'm doing this so that I can go for days with out thinking about this. So it's off to get an EMG from someone called a physiatrist. I'll tell you though, I wish it was tomorrow. I was just going along my merry way when suddenly it clicked that Marie was trying to tell me that this was a big deal as serious nerve damage could occur if it's not getting oxygen. Well it finally sunk in and I hope I haven't waited too long. But it's pissing me off as the rest of me doesn't feel too damn bad, and that's good and I want to enjoy it!
I'm also trying a different oral drug that there is a ton of testimonial evidence on called Low Dose Naltrexone. It's a very low dose version of Naltrexone; a drug that is/was used for opiate addiction! I know that it releases endorphins and my brain simply needs all the help in the world to try and heal. Now I really don't know if endorphin release promotes that, so if you do, don't tell me! There really are some great stories of success using simply that drug. It's apparently very benign and has minimal side fx. When you start you can apparently not only dream really vividly, but also have some disturbed sleep, but the protocol calls for easing into it to help with that and is then dosed based on your weight. Regular Naltrexone for it's original intent was 50mg/dose. This starts at 1.5 then to 3 then to 4.5 and that's the dose you go up or down from based on how you're sleeping. I've also recently learned from the woman at http://ldners.org that you can take it during the day now; it used to be thought you had to do it at bedtime but that has apparently changed. That webiste has a wealth of information on it, is easy to follow and all the links work, which is nice. SammyJo did a great job with the site. The probable reason for no trials (there may be one going on now, I don't remember) is that it's cheap because it's been on the market for so long. So there's no incentive to fund a trial. Sucks, but that's the way it works. So that should be here in a few days and I'll let you all know how that goes.
My golf tournament/fundraiser is coming up next weekend. I hope it dries out, it has rained non stop all week long and is supposed to go right up until Sunday. That's going to be quite the gesture. It's going to be like a chick flick in there if they make me speak; there'll be dudes crying and stuff. I used to speak in front of lots of people all the time for work. It's totally different now as it's such a totally different deal when you can't see. Don't know why or what that is, but I don't speak in front of people like I used to. I'm sure it's also got something to do with searching for the words and not just ripping it off like I used to. I will have to say something, but I am such a chick now. I'll come in during then end of something like "Terms of Endearment" and start tearing up not having watched a minute of it. Oh well, I just blame it on the MS... Well my shoulder is starting to yell, so I need to stop typing. Till next week...
I'm also trying a different oral drug that there is a ton of testimonial evidence on called Low Dose Naltrexone. It's a very low dose version of Naltrexone; a drug that is/was used for opiate addiction! I know that it releases endorphins and my brain simply needs all the help in the world to try and heal. Now I really don't know if endorphin release promotes that, so if you do, don't tell me! There really are some great stories of success using simply that drug. It's apparently very benign and has minimal side fx. When you start you can apparently not only dream really vividly, but also have some disturbed sleep, but the protocol calls for easing into it to help with that and is then dosed based on your weight. Regular Naltrexone for it's original intent was 50mg/dose. This starts at 1.5 then to 3 then to 4.5 and that's the dose you go up or down from based on how you're sleeping. I've also recently learned from the woman at http://ldners.org that you can take it during the day now; it used to be thought you had to do it at bedtime but that has apparently changed. That webiste has a wealth of information on it, is easy to follow and all the links work, which is nice. SammyJo did a great job with the site. The probable reason for no trials (there may be one going on now, I don't remember) is that it's cheap because it's been on the market for so long. So there's no incentive to fund a trial. Sucks, but that's the way it works. So that should be here in a few days and I'll let you all know how that goes.
My golf tournament/fundraiser is coming up next weekend. I hope it dries out, it has rained non stop all week long and is supposed to go right up until Sunday. That's going to be quite the gesture. It's going to be like a chick flick in there if they make me speak; there'll be dudes crying and stuff. I used to speak in front of lots of people all the time for work. It's totally different now as it's such a totally different deal when you can't see. Don't know why or what that is, but I don't speak in front of people like I used to. I'm sure it's also got something to do with searching for the words and not just ripping it off like I used to. I will have to say something, but I am such a chick now. I'll come in during then end of something like "Terms of Endearment" and start tearing up not having watched a minute of it. Oh well, I just blame it on the MS... Well my shoulder is starting to yell, so I need to stop typing. Till next week...
Friday, September 18, 2009
Quickie update after a couple of days
Well my feet have come back down to earth because I do have a surgery related headache, BUT it's not even bad enough to take anything but a couple of Advil. To quote Bill and Ted "Strange things are afoot at the Circle K!". There's something going on and I'm going to walk the airports going home. That will be flippin' ginormous. I'm still pretty damn giddy about the way I'm feeling. Yes I still feel like I have MS. But do I feel better than in the last few years? Hell yes. I can say it now. Something is very different. I almost let myself fantasize about what I'd do if I got my health back, but had to stop short. Quite the coping mechanism I've developed to not get too let down. The 'balanced' vision, the conversations I'm having without looking for words, it's unbelievable. Conversations used to wear me out in a large way. I love conversing with people and when my host family was doing the dishes tonight they were jamming to some funk. I actually got up for a moment and did the neck bob. I couldn't even move my neck last time, and my mom can attest to how bad the trip home was. Just a quick update because it hasn't gone away. I hope it never does.
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