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.


  1. Lew I have been following your blog and if you don't mind I'm going to make my husband read this too. I think this procedure is a huge step in the right direction for ms.

    Have you read or talked to anyone about iron chelation? It might be a "witch doctor" scam and I'm not sure it would work but it seems to be a gentle approach to removing the buildup.

    Keep up the good work on the blog. You would absolutely make it as a writer. You express yourself well and I feel that your sitting in the room talking to me as I read it.

  2. Hey Marcia, I have been thinking about the iron chelation thing and discussing it with people. It's a funny one though. Mercury and Flouride chealtion and that is after 100% of it because none of it is good for you. Iron, on the other hand, is in every single one of our red blood cells. So I'm keeping me eyes open for something that could target excess iron, but not make you anemic. EGCG is something I'm looking at. Thanks for your kind words! Is this ssmmeee?

  3. How has your Campath experience been so far? I'm still very curious about that drug as I am starting to view this as, once your progressive, a multi-headed monster that will have immune activity on top of the inflammation from iron once it trips over into the progressive phase and isn't inlfammatory anymore.

  4. Lew, beyond the shadow of a doubt your best blog yet. Period! Mark. CureIous.

  5. I related to your take on new interventions, especially pharmaceuticals. The "so will I always need this or something else" feeling. Thanks for sharing your thoughts.


  6. I have just read about your lack of acceptance of MS and it absolutely mirrors how I feel. I also don't take drugs or use aids for the exact same reasons. I live in the UK so can't have the CCSVI procedure but am looking into which supplements may help and grape seed extract seems to be the most likely one. Thank you so much for sharing your story - it is so comforting to hear someone else deal with things in the same way. Here's to bloody minded stubbornness!


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