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.

1 comment:

  1. Lew,

    Makes me sad that you are having so many problems. You didn't mention when you go back to California, but I hope that when you go they do find something and repair it. I haven't been very good at keeping up with your progress, but it slipped my mind (senior moment or blonde moment) whichever you prefer. I will start reading your blog again to keep up on what's going on in your life. Love to you, Brenda and your sweet Sarah.

    Cindi

    ReplyDelete

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