Friday, August 14, 2009

Lew's screed on why the hell I'm doing this

I don't have to work this afternoon so I thought I'd write something on the blog of substance since my last post was a cut and paste job of my email to my Dr. Dake. So why in the hell am I willing to let someone cut on me and do this when all the magazines I see show all these shiny happy people on these medicines? The answer to that is to follow and also why, as Hillary says, "I'm in it to win it".

Let's start by a little talk about what this shit actually DOES to you. Most of you know me and see me and know I don't "look" handicapped or even sick. However, there is so much that you don't see and that's what the MS community calls invisible MS. There's even a movie out there called "But you look so good?" that follows a few people around who have MS so you can see what they deal with. I mean I'm obviously not going to intermittently catheter myself on the deck when we have company, I'm not going to use a laxative suppository in the front yard, and you can't 'see' pain, weakness, dizziness, lack of hope, and the fear that comes from not knowing. The fear that you get when you start having a relapse. You think "when is it going to stop? Is this the one that takes out my legs? Is this the one that makes my arms useless? Is this the one that's going to make me a prisoner in the house?" All that shit works on you. Even more so when you have symptoms that you feel all day long. And this son of a bitch is relentless. Yes you can have "good" days, but it really never takes a break for a good deal of us.

So every day I have to stretch before I move too much or everything just "yanks up tight" in my legs. Next is into the shower where it sucks because I can hardly stand to be on my feet for 10 seconds without shoes on. Flip flops in the shower? Not an option. The way they move around makes the arch supports feel like a rock and the flat ones you step "off of" and it makes you fall. Then it's into the cold shower because if I take a warm one I can't see to shave when I get out. So I step out and immediately step into some running shoes (cruel joke calling them running shoes). By this time I'm usually good and dizzy and fall into at least the door jamb if not the walls trying to put stuff away. Then it's time for the 'ol pee straw. Let your mind wander, but I do this 3 times a day. Then it's down the stairs where I usually can feel if it's going to be a "good day" or a "bad day" based on how bad my hamstrings and calves scream when I'm going down the stairs (which has been getting better; good thing). Then the ride to work. It's the only ride I enjoy because I know I won't have to pull over in front of somebody's house to pee behind my car door; thank God I'm only 5'8" tall. On a side note, I've been busted doing this by the Ohio State Highway Patrol and he absolutely berated me about "what if a grandma drove by?" until I told him what it was all about, then he had some mercy and didn't write me an indecent exposure ticket. Ask my family how many times I sometimes have to do this.

OK, now we're at work, "stayfree penie pad and all". I know sometimes this is TMI, but I'm trying to educate here! I usually will turn my computer on before I have to take the fun step of a suppository. Once again, I'll spare you the details. Then it's just hoping it works. Meetings are great fun, especially when you're the one holding the meeting and have to pee about 4 times in that hour (that's not an exaggeration). As the day goes on I will eventually have to walk to someplace in the shop. I can do it, but what you don't see is my legs screaming at me to get off of them and stay off for about a 1/2 hour. As I've noted in earlier postings, my recovery time is getting better and that's very welcomed. Lunchtime! This has been MUCH better since the operation but before then it went like this: Walk to car, this act made me dizzy and have poor vision. Go get food, walking into place to eat makes me more dizzy. Take food back to work, be dizzier, eat sandwich in about 1 minute because I have to cram it in fast because I'm nauseous. Once again, this is getting better since the surgery (grateful!). So the things at work that suck are the constant interruptions from my bladder as well as the dizziness and crappy eyesight and the leg strength is a major impairment because I can't do my job nearly as effectively as I should because I can't stand in the shop for long or walk very far in it. Plus if I forget something in my office and have to go back, that sucks really bad also. This whole time something called brainfog is getting worse; you lose the ability to focus and stay concentrated. I have to write down even the simplest of tasks by lunchtime every day.

Go home and it's much of the same, but now there are stairs and things that need to get done that I have no energy left for; and I'm supposed to exercise! I usually do some of them anyway and pay for it by almost falling down the stairs (that's gotten better too!) and having my legs hurt so bad I can't explain it. I'm running out of energy just talking about this so I'll wrap up quick. Then we eat and it's the same thing as lunch time, but by this time in the day, the energy of eating makes my eyes go out worse and makes me REALLY dizzy. Then I have to stop drinking at 8:00pm so I won't pee the bed even with a nighttime intermittent catheter job. Bedtime; pee straw first, and then into bed. Sweet relief! But I have a beautiful wife that I want to show some love to quite often. Will it? Won't it? About 90% of the time the fatigue and pain are too much to even ask the question. The rest of the time it's about a 50/50 gamble. I wish it weren't this way baby!

And there's more that's a little more personal even for me. It's so regimental and you pay for it when you deviate. Suffice it to say that this isn't a complete list and I didn't write it to have people say "man, I never knew" or "wow you have a lot to deal with". You don't look at it like that, you just do what you have to, but after this many years I must say it does suck ass to deal with. Keep in mind that as the day goes on, everything, and I mean everything gets harder as time passes. It doesn't change at that point until the next day. I don't want sympathy for any of that. I just wanted to let people know who may think "why would you go through that surgery, you look fine?". Well think every day, and some days it just gets overwhelming, i.e., the things you have to deal with take more time than the time you have to be productive. And I also need to point out that it was getting worse almost daily. A little weaker, a little less bladder capacity, a little less everything. I also didn't even talk about the mindfuck and how you can't stay focused and you can't just go from pissing your pants to presenting a proposal. If it were easy to just put it in a box and get right back in to what you were doing it would be awesome.

I'm not done, I could go on ad nauseum, but I think you get the point. All of this culminates until you start to lose your sense of self. I was very comfortable in my own skin before MS, now I'm not. You can't do the things that made you feel good about yourself. So you start having low self esteem and everything you do to try to get it back is nuts. Everything looks different, feels different, it's hard to explain but I'll know one group of readers that understand it implicitly. And all of this hits you right in your prime. You're just getting it figured out to the point where you aren't screwing things up with poor decisions. You are usually raising a child and in the peak of your career curve.

Losing the things you love to do sounds kind of benign when just spoken. When lived, it sucks a bunch more. I can't do anything physically anymore, that's a given, but it's even hard to do things of leisure, like camping, just going out, things like that. Golf, could there be a less cardio sport? I can't do that because a couple of swings is all it takes to put the wheels of weakness, dizziness, pain, bad eyesight and other things in motion.

Here are some of the reasons why I'm doing this and it's all in response to not having to deal with this anymore.

Number 1

The drugs with all the shiny happy people in the ads are absolute shit once you get to a certain point. They advertise some small percentage of efficacy, but that's always on newcomers to MS, never on people who've had it long term. And anyone with this disease knows that the first few years are usually pretty mild. My heart goes out to anyone who gets slammed with refractory RRMS. That's a type where the attacks are very severe almost from the word go. I'm fortunate not to have that variant. The trials were all done with newcomers and next time you happen to see an ad for one of the drugs, look for the fine print describing the person in the ad touting the benefits. They'll usually say something like "Kim, 34 dealing with MS since 2007!". Well whoopdee shit; two years out I guarantee I could have outrun, outbiked and outworked 90% of the people I know. That's not me saying I'm all that, it's me saying that the beginning of this disease can be pretty mild for a lot of us. It's all about luring in new patients who are wide eyed, ignorant of the facts of the disease, scared shitless and looking for the answers they usually get at the doctor's office.

Number 2

My jugulars are clogged, they shouldn't be even if I was healthy; next

Number 3

You could put stents in my veins that are perfect and it's not like it would harm me. This isn't an experimental drug where you don't know the side effects. The side effect with this is post surgery pain; something you get over.

Number 4

The etiopathegenesis of this disease is very poorly understood. Even though it's not what your neurologist will tell you, autoimmune is a theory. The antigenic target is not known (thanks Marie) which makes it a theory. Hey, I'm not saying it's not correct, but it's not proven. Showing statistical relevance (enough to get approved drugs) with a bunch of new patients is not a big deal to me.

Number 5

Right now (before the surgery) I was getting worse non stop. I want it to stop and I've been on Avonex, Tysabri and Tovaxin. None of them kept me from having relapses. So why should I keep taking them? They 'ain't free that's for sure and we don't know their long term effects and you're supposed to be on them for life.

So there's my "everybody gives a shit about what I have to say" screed about why I'm doing this untested procedure. The internet forum I frequent; has a posting from one of Dr. Zamboni's original study patients. Apparently they are now allowed to talk about it. Some of these folks are 18 months out from the procedure (slightly different, they used balloons, but will be getting stents soon I think) and doing very well. I won't comment on someone else's condition without asking them so do yourself a favor if you're curious and check it out. You register, go to forums, scroll down to CCSVI and the one I'm talking about is under the heading "Press Release Bologna (that's a city dumbass, not a lunch meat!) September 8th". The part in the parentheses is not there! So later until next week!


  1. Wow, what a read! I can so identify with your description of how the day goes. I struggle with most all the same things, but I look so good,lol. :) Love your posts, keep them coming.

  2. Wow, I never really knew what people with MS go
    through until I read this. All I kept thinking about was the guy I knew in school and can't believe that you are going through this now. It just does not seem fair. Even though I don't have MS I can understand some of the things that you have said here. I have had cancer, my body has been deformed from radiation treatments, I now have kidney disease in my 1 good kidney and RA. People look at you and see that everything is ok, but you know its not and you have to fight the battle every day to keep going on. Keep posting your updates and don't be afraid to put how you really feel in there. I wish you all the luck and you are for sure in my prayers every day from now on.

  3. Well done. Well said. Thank you for having the courage. I hope to follow in your footsteps :)


I've figured out how to get everyone to be able to post on here.