Saturday, July 24, 2010

A couple of weeks past my one year 'check up'

Well it's been a few weeks and I'd been waiting on the images from my MRV to be able to show what's what in my head and neck instead of just describing it, but since that's where we're at, let's get it on. As those of you who are frequenters of Facebook and ThisIsMS.com know, things haven't been totally on the upswing for me in the last few months. I need to put this all in context however. After all, I'm sitting here in my dress clothes getting ready to go to a wedding reception NOT wearing my hiking boots. Those of you who know me personally know that I wear boots or hi tops 100% of the time since shoes simply don't have enough support and it will wear my calves out in 20 or so steps. No shit. I can't explain it and I really don't know why, only that it is. I still wear them most of the time, but before the procedure they were also my bedroom slippers, I would step into them right out of the shower and it was actually pretty funny sometimes; at least according to my lovely wife. Suffice it to say that I was scared to wear anything else since I would get weak, in pain and wobbly very fast out of them. So I didn't EVER wear anything but those dudes out of the house. So even though this isn't a post where I tell everyone about all the things that have improved, I'm still so much better than before it's remarkable. BUT since I did have improvements, it is absolutely a let down when things start coming back.

So since I posted a while ago about all my symptoms and whether they were better, worse or unchanged, we'll just do it again. Here is that list from that post:

Optic Neuritis Better
Chronic constipation Better
Over active bladder AND Detrussor/sphincter (urethral) dissynergy Unchanged
balance problems Better
chronic vertigo Better
Foot pain Unchanged
Leg pain Unchanged
Leg weakness Unchanged
Leg spasticity Unchanged
Gait (stride) issues Better
Some sexual dysfunction (hey, I said I was going to tell it all) Better
Stiffness (ha ha right after that!) Worse

The things that have gotten worse are the constipation (qualifier that I'm now taking two different drugs where that's a side effect, so the jury is out on whether that's actually worse from MS or the drugs). I've been getting transient vertigo when I over do it and that was almost gone. Once again, it's still markedly better than a year ago. Leg pain is the biggest thing that's gotten worse. If there were such a thing, I'd go for a knee transplant. My knees hurt so damn bad I'm walking more bowlegged than Robert Duvall; and I already WAS somewhat bowlegged. And finally my leg strength has diminished somewhat also. I simply can't be on my feet for as long as I could even a few months ago and can't walk as far.

So now you know what's going on with me. Nothing has gotten better, and those few things have gotten worse from my new post procedure baseline; not from where I was before the procedure. So all is not lost. It's just scary AS HELL to not be improving since the opposite of that is getting worse. And no one wants that. Life is good, just not as good as it was a few months ago and it's probably more scary than actually physically life altering so there we are. So I'm hating stairs because of my knees, hating getting dizzy again, but loving that I still don't need my cane. So on to what we 'found' at Stanford.

If I would have said that I was fine, Dr. Dake would have just said everything looked fine too. Yes, I'm still the proud owner of two McDonald's straws for jugular veins. And yes, I still loves me some stents. That ONE SINGLE article in the Wall Street Journal has everyone majorly histrionic concerning stents. Don't ask me why since we ignore the people trying to tear this down on every other front, so that one puzzles me. After all, there is a 40 some percent restenosis rate with balloon angioplasty, so count me in as a fan of stents. But since I didn't say all was hunky dory, he kept looking further 'down the MRV'. Now I have to describe what we saw without pictures. I hope you all can picture this in your mind's eye, so here goes.

When you are looking at your images from the top of your head down, you see your carotid arteries and your jugulars on the right and left. In the image, your nose is at the top of the screen and your ears are left and right. Well your carotid arteries show up as these perfect, white circles on either side of your head since the contrast dye makes them appear that way. Your jugulars are right next to them. The first, pre procedure images had my nice round carotids and my jugulars were just these flat lines. Now my jugulars are even rounder than the carotids. They look great when great means open for business. So since I said I wasn't great, he kept looking downward into my body. Your jugular veins 'dump' into your braciocephalic veins, it's either those or your subclavean veins. If anyone points out to me that those are misspelled, you would probably be right; I don't feel like googling it right now and that is the hooked on phonics version. Well those veins that the jugs dump into (know I'm not talking about actual jugs Lisa you perv :-)) go 'across' your body, or 90 degrees opposed to your jugs. Well there's an area where that SUBC or BRACIOC vein goes around something (I think it was my trachea) and it's stretched so hard that it is markedly narrowed. He noticed this since there was a collateral vein shooting off. Your body just doesn't have collateral veins unless it needs to manufacture them since the main vein isn't doing its' job. They show up on your legs as spider veins, that's what they look like in MR images also.

So we also looked at my last venograms from my last procedure and there IS a flow issue there. Not like the ones that were in my jugs, but one nevertheless. So I could be having reflux right there. If you remember, he saw something on me the first time that he didn't know what to make of, collaborated with other doctors, and I went back out and we fixed it. Same story this time. He told me he could put a stent in there, but he just doesn't know if it would do anything or not. So he's supposed to send my images around to other guys that have been doing this in Poland and other places and see if they've encountered this and what they did for it. Just because there's a collateral vein there doesn't mean that the occluded vein plus the collateral aren't doing the job, but we do know there's at least some impingement to flow at that area, we just don't know if jamming a stent in there will have any effect. So we wait. This has given me a good reality check fo' sho'.

Let's say that is causing issue, and there's nothing we can do about it. I've already accepted the fact that I have MS. So when MS'y things happen, I can't act like someone shot my dog. Those things happen when you have a condition. So getting upset every time things happen is like banging your head against the wall. But that's what I was doing. I started to get dizzy and I was all screwed up about it. We didn't know if this was going to take us back to normal; hell, we didn't know anything. But I see other people who are having remarkable results from this. Guess what? They are still relapsing and remitting. I'm progressive. That sucks but it is what it is. I can do NOTHING about that. I'm still working. I'm still doing social things (not everything, but 'stuff'). I still have a great marriage and daughter. So I can't 'woe is me' this situation. I just can't. Those of you who follow this know that I'm hell bent on handling my MS with grace no matter what happens. People do it and I have to be one of them. Sometimes when you get scared, you get desperate and feel hopeless. It's not to say that those times don't happen. They do, it's that you can't let them define you. I mean this is my life whether I like it or not. So I'd be a giant pussy if I let it make me put my head in my hands and just give up. My life is decidedly not what I wanted it to be; but it sure could be worse. But I can't do a damn thing about what I am now. I need to like myself and have a way of looking forward to tomorrow. When you quit doing that, you are screwed. I can't take self esteem from physical prowess anymore. Boo hoo, I haven't been able to do that for a long time, so I need to get over feeling envious when I see people doing things as simple as dancing at a wedding. I'd LOVE to be able to do that, but I can't so I need to move past that. I have to say that I do miss the nutjob and very physical guy that I was. But that in and of itself is not enough to knock me down. People who let that get them are not working hard enough.

I still have loads of hope locked away. No one, except someone who needs it, quite understands how powerful hope is. It is probably the single most important thing that keeps us out of the looney bin. It's amazing how my attitude towards hope has changed now that I watch what happens to me and others when you get some hope. It's an awesome thing hope is. It allows you to look forward. It's kind of that simple. It's a reason. It's whatever, I can't fully express it like I want to so I'll stop. A good analogy would come in handy here but analogy boy just doesn't have one! OK, here's sort of an analogy that I'd like everyone so inclined to read. It's a woman's take on having a disability (she just happens to have lupus) and it is the best thing I've read in terms of describing what it's like to people that aren't sick. Here it is, and it's great:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I read a story in 'The Week' last week about the only surviving quadruple amputee that got that way in Afghanistan. He has no arms and he has no legs. Yet his spirit is indomitable. The whole hospital is in love with the guy and he's touched a nurse so much she wants to marry him. He talked about wanting a daughter. You know why? So he could tell her first date "you should see the other guy!". Now how can I EVER feel sorry for myself when he's out there?

Thursday, July 1, 2010

Well this sucks

I have to write down what's been happening to me as of late. Part of it could be that I folded my knee in a complete flexed position (calf pressed to hamstring) with all my weight on it and felt like my knee was blowing up, but I don't think so. A bit on that: I was walking down the stairs and just caught my right (good leg) heel on the carpet of the stairs, luckily only about 4 stairs up from the floor. Well with feet that don't move too quick, I couldn't catch myself by hurrying down the last few steps, so I had to jump to keep from hitting my head on our buffet. My knee just buckled since it was my left leg. So now that knee is screaming in a big way. Going up and down stairs is the hardest part. Especially up when I try to lift with the left leg. It literally feels like a nail is being driven into my knee. The feeling is on the inside of the leg at the area of the knee that directly 'looks at' the other knee.

Well while that sucks, I have been feeling like I can't do shit here lately which started happening before I hurt my knee. By lately I mean the last week or so, but I know how things that are injured can screw me up all over, that's why I mention it. This has all been since my last post. The marker I am using to say all of this is camping. Those of you that keep up with this blog know I camp. Well getting ready to go and setting up camp (I have a trailer so it's not like setting up REAL camp) is harder than it was even on Memorial day, let alone last year. This was a line in the sand type of activity because of the large chunks of time between camping trips, so I notice it more succinctly. I also have been having a harder time peeing. That really sucks as that has been, besides my eyesight, my longest running symptom and had remained pretty much the same for a long while and actually got a little better post procedure. There are some things going on at my stent site that make me go hmmmmm.

As some of you who also read this know, I have a stent in an area you can feel behind, and just below, my ear. I've talked about it being swollen and talked about it hurting mildly. Well since this all started it has, no shit, hurt worse than usual and also I have a bit of puffiness just under it that makes is almost feel like swollen glands when you're sick, but only on that side, and it's much softer. It's also pretty tender. So my hope is that there is something to that. I don't think it would have shown up on the MRVs I've had since then since we were looking at the veins only, but this time I'm going to make sure we look at that. This really sucks as I had really, really felt stable up until now.

Now don't get me wrong; I'm still doing the things I need to like working and keeping myself taken care of and the house picked up. Honey, if you're reading this, I don't mean I clean the house. We have a trade off where she does things that require cleaning and I keep things picked up. I don't have to bend over as much and for just quick bends to pick something off the floor, but I digress. I'm still GOING camping, although there are things about it I'm dreading. Just things that require a lot of movement. We're the types that have to have the camper just so to relax. Well then you have to take it all down and my wife has a shift at the hospital. Other than that I AM looking forward to it. It beats working but it will hurt at times. I'm just getting exhausted after not doing shit. It's frustrating, once again, because I've been doing so well. But this paragraph is to let you all know I'm still living my life, it just has become hard and painful again here lately. And it's been quick. I don't know if it was a 'straw that broke the camel's back' type situation, or something is clogged up and shits' gone wild.

Which leads me to theory corner. Since that area has been tender since before my MRV with the guy up in Michigan (E. Mark Haacke) and he didn't notice anything, I think once you go progressive, something else happens. Yes I know you quit popping off lesions and quit having relapses, but I think it involves your upright veins. I am saying that ignorant of whether anyone has looked at these. I'm talking about your vertebral veins. At least I think that's the spelling. These drain your brain when you're upright. Your jugulars only drain you brain when you're laying down. I just have a feeling it becomes 24/7 when you are progressive. I have no way of knowing that, but it makes sense to look at those veins. Hell, he may have, but I don't remember talking about it. That's another thing that's been going on.

I've been struggling for words (I know) and not being able to do simple math (I know again). For vocab boy, that's a toughie! But seriously, it does feel like there's something going on. I just hope it's not MS progression, but if it is, I once again hope for the doctor to find something wrong. I really do. So I don't know what to think about this. Is it ineffective on "my" type of MS? Do I have lyme disease? I just don't know the answer to those questions. I doubt anyone knows the first one.

There is this article:
http://www.expert-reviews.com/doi/pdfplus/10.1586/ern.10.69

that really makes me hopeful that some of the money we throw down the toilet (of course, my opinion, but just ask anyone on these shitty drugs) on trashing MS patients' immune system will be diverted to stem cell research. As I've always said, and many others have echoed, this is probably just a piece of the puzzle. I've always thought that after we shut that slow blood drainage down that we'll need repair. So off I go on another journey I imagine. I'll be first in line at Ohio State if they ever have a trial for stem cell therapy. While I hope that my Dr. at Stanford finds something, I'll also be keeping an ear to the ground on the stem cell front. It should give me something to do.....!

I also have to give credit to my friend Joan for turning me on to this article. Even though we don't talk every day like we used to on ThisIsMS before all of this, that woman holds a special place with me and I imagine I do with her also. Love 'ya Joan. I imagine I'll wait until I get to California to post again. Keep your fingers crossed that I need to be roto-rootered.