Thursday, November 15, 2012

Head games, feeling profound and progressing

I have not posted in quite some time!  It's not because I have nothing to say.  But I created this to track my progress, or lack thereof, with the CCSVI procedure I had done.  Well that's been well over two years now and things are back to just living with MS.  So I've pretty much just been doing that.  But things most decidedly HAVE changed.  I get started posting these since we all know I find writing cathartic, and then I lose steam as I'm actually writing.  Not sure why.  But it could just be I'm tired.  Tired of fighting this shit for which there's no cure and no help, at least not medicinally.

So I really, really need to focus on the only thing I CAN control; and that is my wellness.  Being a self appointed 'wellness guru' before MS, I'd have thought that was the easy part.  But my motivation to try and be so well before obviously came from a different place than the motivation required to not be well, but just to "be".  My focus now is to not impose any self inflicted wounds on myself.  So here we are.  I have been inflicting self inflicted wounds on myself I suppose but I'm not so sure.  I haven't been exercising much, and that works on me.  But as I write this, I also realize that the will to exercise is not lost, the ability is getting lost.  By the time I get dressed to workout, drive to the gym, walk in and swipe my card, I need a rest!  This does not sit well for the rest of my life as there are things I need to do at home.  I am capable of still doing some things around the house and I'm at the point now where if I go work out, I can't do much of anything else for the rest of the day!  So I suppose I'm wanting some feedback from fellow MS'rs.  How in the hell do I learn how to partition my life like that?

By that I mean I can do a load of laundry or two, then I need to rest or the crash won't be able to be recovered from for an entire day.  So how do you work a little bit (but not TOO much or you won't recover for a day), then rest for an hour, then know you are recharged to a point, work some more, rest some more.  As I read it, it sounds easy, you just do it, right?  It just isn't that easy.  You get stuck sitting and you just don't feel like you even have the strength to get up and do another load, or sweep the floor, or whatever it is; because you can't forget you have to save some to make dinner!  And then to throw the gym on top of not even being able to get my work done?  It just doesn't happen.  And then the HUGE critical parent I have inside of me that makes me so 'task completion oriented' kicks in.  We just have to work out, right?  Isn't it just about the paramount thing in all the MS magazines that we must exercise?  Well life kicks in.  I have a teenage daughter and a wife that works 12 hour shifts.  Dinner doesn't cook itself and 16 year old, active in everything girls, well they're 16 year old active girls.  They need tending to damnit!  I mean I don't have to 'raise' her anymore per se like wipe her butt, but there are banquets for sports, school meetings and all that shit and it seems to never end and I only have the one at home.

So I guess I'm at the point where I can't do it all anymore.  I have to pick and choose what I'm going to do during the day since something just isn't going to get done.  And isn't the point of exercise to make it easier to get through a day?  Well when you have this shit it doesn't work that way.  So I'm picking life first, and if I get the chance to exercise, then I do.  It just doesn't happen very often so I do a few sets of leg lifts and 50 pushups or so and maybe 10 situps.  Doesn't sound like much but you should see my damn face on about the 6th situp! 

And what this all means is the point of this post.  I didn't come back on here just to bitch about progressing and having to choose what to do since I can't do everything I want to do.  The issue with that is that list just keeps getting shorter and shorter.  Not what I want to do, but what I can do.  So since I am always on the lookout for the depression monster, I have to get on here and write and try and sort through this and keep my chin up.  I absolutely know that there are things going on in some people MS heads that physically cause depression.  People don't just get bummed out about having this.  If that was the case, we'd all be depressed.  So I truly think that many peoples' MS causes them to become depressed because of the location of their lesions.  But I also know that if you don't keep it on top and always fight it, you can just slip down into it also, that is what I do not want to do. 

All things considered I'm doing pretty well.  I'm scared as shit right now though.  I thought I was at the precipice of life changing stuff about a year ago.  Well it turns out I was right, if I progress much more I won't be able to walk very well or if at all.  Truthfully, I'm not walking that good right now.  But having the progressive form for as long as I have, I really have to count myself lucky.  And there are those indomitable spirits like my facebook friend Mitch Koppel.  That boys MS has tested him so harshly yet his spirit is amazing.  He's my new idol for attitude and if he can do it, I can do it.  You have to break it down that way I think.  I always loved that line from the Anthony Hopkins/Alec Baldwin movie "The Edge"; he gets the troops motivated to just not give up and die by the line "what one man can do, another can do".  It's very true if you think about it.  There have been times when I didn't have the self confidence to do whatever until I spoke that line to myself.  It's a great line and means so much to me. 

So here's my MS now.  I have that type that seems to just drag everything down all at once.  In some people, they have a very specific disability.  There's a lesion somewhere in their brain that just makes something not work right but leaves other things alone.  Well my whole 'functioning' is just grinding to a halt.  It's either that or I'm just at that point in this disease.  It's like when I get overexerted (it takes so little to do that anymore), everything slows down.  I can hardly stay on my feet, my eyesight goes out, my bladder becomes way out of control (thank God for the stadium pal!, my balance is completely shot, I get dis functionally dizzy, and the pain kicks in all over; not to mention I get super confused and can't think at all and the headache is legendary.  And I also get this new one where my entire body just vibrates.  And this is after maybe doing two flights of stairs and folding a load of laundry.

Since there's nothing I can do medicinally at this point (there never really was) I am keen on stem cell treatment.  There is a group of MS patients I'm involved with who have a group that is getting  treatments and it's going very well.  However, the FDA has decided that your own stem cells are their property and have shut down what's going on and made you have to go into a trial or out of the country.  Those who follow me know what a criminal organization I think the FDA is.  I even have a hard time saying that since I don't want to be a conspiracy theorist, but it's true!  I won't get all involved in my reasoning since it is a conclusion I've come to over the years, but they suck and simply are not out to protect you and I; rather the drug companies.  They have become a lobby, that's it and they are assholes.  I'm starting, so I'll stop on the FDA! 

I also wish I wouldn't have been so gung ho on the CCSVI stuff.  It helped me, of that there is no doubt.  But I was so early and at this point they've learned so much more.  I was "hey, you're neck veins are stenosed, let's put a stent in and open 'em up!".  Now it's all about achieving the right blood flow and they just don't look at just your jugular veins.  But hey, everything has to have a starting point and CCSVI research, I believe, will uncover so much more about the etiology of MS than just pouring all the money down the same rabbit hole that has given us completely ineffective, injectible drugs. 

I have really accepted the lot I have in life.  I know if it doesn't miraculously stop progressing from some miracle, I will be in a wheelchair soon.  If I have gotten here from where I was just 5 years ago, the next 5 are not going to be fun since the tipping points you reach where you just notice you can't do things anymore, are coming much faster now that I'm in such a weaker state.  For me it falls into the category of 'it is what it is'.  There's nothing I can do about it and wailing away doesn't help a thing and probably hastens things along since that would make my attitude suck!

I don't want to post this since it sounds like a total whine job.  But since it's been so long since I've posted anything, I thought I needed to 'set the table' and let you all know where I am at.  So the foreseeable future will have me just hating the weather (this cold can kiss my ass, it makes me stiffen up and want to NOT move), and working on how to make my house liveable for me.  Stair lifts maybe, ramps or lifts to get outside more probably, and all that kind of stuff.  If we can make my house handicap accessible, we can do ANY house.  I heard on the radio the other day about this group:, and I'm going to contact them and see if they can make this house easier to deal with!  And I have to get over the thoughts that I think where I guilt trip myself for not exercising more.  It's like in the back of my mind my critical parent tells me I can exercise my way back into more function.  I'm at the point where it just doesn't work that way and I know it intellectually but I need to really feel it.  I have exercised as hard as I can throughout the last twelve years and I still progress.  So exercising is to attempt to keep the strength you have but in the last year or two it just feels self defeating as I gain nothing except in my upper body.  And since I don't walk on my hands, that only goes so far!

I can't beat this thing.  I know that now, there's nothing available even in the dark corners of the internet!  So the mindset is what it's all about.  Fighting a losing battle yet staying motivated to keep fighting; there's the rub.  And fighting means trying something so I wait for something I can afford (right now, stem cells are 25k, which I don't have) to try.  Even if the outcome is dubious, I will try anyway.  Because then I will have that thing called HOPE.  Such a benign four letter word.  Yet without it, things look bleak as hell.  Hope is where it's at in this kind of fight.  It's manna to someone like me.  I need that mindset I had when I embarked on my CCSVI procedure journey.  You can really ignore a great deal of things when you have hope.  They are all there, they just don't hurt as bad!  I don't care if it's placebo effect or what I just need me some more HOPE!  And I went back and reread some of my previous ramblings.  One thing I'm happy to say I don't do is lament the past.  All who are doing that, STOP!  Talk about self defeating.  I know it's hard to be in a mindset where you know you are going downhill yet you have to stay up for your kids, your spouse, your sanity, but lamenting what you can't do anymore is a sure fire way to make yourself crazy.  You aren't getting ability back when you get to this point.  Even if for some reason my opened veins give me some more, real relief, there will still have to be repair and that procedure does not do that. 

So thank God for my wife, my daughter, my dog, my friends.  It's all it's really about anyway.  You lose the stress over things that you used to worry about that's for sure.  All of the sudden 'everyone's a crazy driver!' as I'm never in a hurry, and things of that nature.  I was right there with them road raging and carrying on before all of this, but none of that stuff really matters when it comes down to it.  To bad you need something like this to happen to realize it.  Live like you were dying and all of that.  But that mindset is simply unattainable unless you are actually in the middle of it.  You can get glimpses, get inspired by things that happen and what not, but you just can't stay there until you're forced to!  I have re read this entry and I don't like it one bit!  I feel like it's all over the map, because it probably is.  All of my past entries had a theme to them.  Maybe this one doesn't because my head's all over the place too!  Directionless and all that.  At any rate, I want to start doing this again on a regular basis as it really helped me in the past.  But I need to keep up with it and maybe THIS will be my purpose and give me some direction.  One can only hope.....


  1. It seems we are at the exact same point in our MS progression from how you describe things. You are a kindred spirit to me now Lew ! :) I have been dreaming of the stem cell treatment for quite some time now. I just keep hoping. I have to drive to Piqua today to see my Dad at the nursing home a couple hour drive and I am already worn out just feeding the dogs, cats, peacock, and packing my car up. I just want to lay down but I can't do that to him. Sometimes when I arrive there I have to take a nap!! Craziness. I love when you blog Lew....thanks! Kelly Misich

  2. Lew,
    Your posts do have purpose and direction. Those of us who are going through the same things as you so appreciate your ability to put it down in words. Makes us feel a little less crazy just knowing someone else "gets it".

    Maybe it helps you to know we understand where you are coming from and what you say makes perfect sense to us. Your thoughts and feelings speak for us. Have missed your posts over the last year and glad you are back.

    1. Hey Lew,
      Haven't seen a post from you for about a year. Hope all is going as well as can be. Have missed your insightful posts.
      Thought you might be interested in this video about George Bokos - The Greek from Detroit. It's from the Myelin Repair Foundation. George's mom and sister speak about George's life.
      TAKE CARE, Dee/OH
      I received this in my email From the Myelin Repair Foundation website:
      youtube video honoring George Bokos - The Greek From Detroit
      From: Virginia Saifer (
      SUBJECT: Myelin Connection: Annual Research Meeting, MS Patient Video, and more...‏
      Toughness, Vigor and Valor: The George Bokos Story
      When a patient is diagnosed with MS, the rippling effects of the disease can go beyond that one individual and leave a long-lasting mark on families and loved ones everywhere.
      This is George's story.

  3. I'm glad to read this post and see you're back...I hope you keep writing, because you do such a great job putting into words what so many of us are coping with on a daily basis, of laying it out there in such unflinchingly honest terms. I didn't think this post was shapeless; on the contrary, you had a lot of ground to cover, a lot of catching up to do.

  4. I like your movie quote "what one man can do, another can do". The links below are to a neurologist who has progressive MS, was in a tilt wheelchair and now commutes by bike to her job. Hope this is hopeful for you:-)

    The YouTube video has over 1.2 million views,so you may have seen it, but I think it's a good one. Good Luck

  5. Thanks for that, I'm totally familiar with Dr. Wahls, thanks!

  6. Glad you're back. Wondered what happened. Know your pain since I am Greek's Mom. He didn't quit, he just got gut shot by life and MS. Keep writing.


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