Saturday, December 19, 2009

Holding pattern again

Well I seem to have platued a bit in my recovery. I haven't been feeling like I've improved any over the past week or so. I don't feel worse, but had been feeling "good progression" for a few weeks there. I have noticed that I have also been feeling the winter blues somewhat. Not in my attitude, but rather in that way that all of us MS'ers know; the cold somewhat locks you up. I've been stiff as a board in the mornings and have been doing a lot of shivering. When I get cold, it's not good. I start shaking like a dog shitting a razorblade and can't stop until I get REALLY warmed up. So the winter is always hard on me as I get stiffened up.

So nothing bad to report, but nothing good either. Me and Randi (fellow stentoneer) went to get MRI-SWI's last week up in Michigan and that was cool, but we didn't get to get imaged in a 3T machine like he wanted to do since we couldn't find the exact model of stents to clear us for stronger imaging. Probably would have been safe, but didn't want to find out the hard way be heating up my stents to about 150 degrees! I have been feeling like some spasticity is creeping back into my left leg, especially around the knee and calf areas. I'm not limping like I was before all of this, but it's starting to feel tight. Now that's not a new symptom, it's not worse than it was (it's still way better than it was) so I'm not panicking or anything like that. It's just that I don't feel as rock solid as I had been. Hopefully that's one of two things; the cold, or the LDN as I've read that it can temporarily crank up spasticity and I've increased to the max. dosage of that stuff here in the last few weeks. Maybe I have to scale back to 3 mg vs. 4.5 mg. That's the way you do it, you scale up to 4.5 mg every night, and peel back to 3 mg if you are having issues.

So I'll give it another week at the 4.5 mg and if it's still there, I'll pull back to 3 mg. But if that doesn't do it, then I don't know what I'm going to do! I was getting quite used to feeling like each week was a little bit better than the previous week. I go through this every winter it seems, so I don't think I can completely discount the effect that the constant cold has on me. I absolutely hate the cold worse than the heat. I remember when I first got MS I was so heat affected that I would stand outside in the snow with a T-shirt on to cool off and get my eyesight to 'come back'. Not anymore! So I'll post again in a week or so and let you all know the rub. Even though this isn't as upbeat of a post as the last few, I can still say with out quesion that I'm firmly on the good side of my new litmus test for this procedure which is this: In the last 8 years I could never say "these last six months were better than the previous six". I can now and still would have a long way to go down to NOT be able to say that. So let's just hope my histrionic ass can get through the winter!

Saturday, December 5, 2009

Another week in the books feeling pretty good

I noticed it had been a week and wanted to update to let everyone following know that it's been another good week. I haven't had any massive improvements or anything, but I've just been plugging along, working out every other day on the Bowflex. It's still just to keep stretched out more than anything as my shoulder, although somewhat better, will still not take any weight until the nerve heals. It's weird to work out like that. You don't keep adding weight as you get more in shape. My shoulder will take what it can take and I can't build any strength in it until my trapezius muscle reappears. But I do it to keep my range of motion pain free.

My wife wanted me to talk about how I've been feeling in a different light. You see although I am doing better than I was, and it continues, she's like "but you still come home and bitch about how you feel, you wouldn't know that by reading your blog". She's right. But she needs to realize what I try to keep conveying. I can still get myself worked up and "MS'y". However, it's so much better and that's the baseline I compare it to; six months ago. Back then I was at a point where I was hardly capable of two trips up the stairs a day. Now I go where I want to, when I want to, and then bitch about it! But those with MS know what I'm talking about. When you get steroids for three days, you can do SSSOOOOO much more, but you still have your shit to deal with. This is like that 24/7 now and I think it's great. So she's made me realize that while objectively I am doing much better (and she could give you some personal insight into that thank you very much :-)), I still do some of what I talk about back in my "A" word post. I still bitch about ability when compared to how it was when I was normal. I just haven't figured out how to work that yet, but I will.

So I had another really good week at work where putting in 45 hours was absolutely no problem and I DIDN'T GET DIZZY. That is so freakin' huge you guys just don't even understand. It takes your life over. You don't want to go anywhere where you might fall into something, you don't want to walk anywhere where you don't have something to grab onto. Imagine being in the middle of a field and being scared to move. You just don't feel stable. And while I had some dizziness, like everyone, occasionally in my "normal" life, you can't really draw a frame of reference for years of constant dizziness. It's not something you get used to and I don't know why. You just don't adapt and settle into it. It truly is a despicable symptom. One of the evil ones if you will.

So my energy is still up and my pain is down. Most of my stuff is better as I can do almost everything 'longer' and need less recovery time. Hell, before you know it, I'll be normal! Wouldn't that be nice. But I must admit to thinking there's probably a limit to my recovery, but I'm going to keep trying no matter what. I have to keep exercising and working and living. It's awesome to even think of life in that framework. I wasn't ready to give up on life, but I was at the point where I was starting to forget what day it was because it really didn't matter. Each day was just trying to get by and get to bedtime without too much pain and discomfort. I think some of you know where I'm coming from there. You just don't care anymore because you feel like if you exert any energy at all, bad things will start happening. Well now I think about what I had to do today without dread. I have a Christmas party to go to tonight and I'm actually looking forward to it instead of thinking "man I better schedule a nap in there so I can make it", and even then hoping it would actually work; because sometimes it doesn't matter what you do, you're just going to not have enough in the tank. I get to hang out with my pretty wife and have her look at me as we socially engage and think about going home and maybe even getting frisky!

I know that's too much information and probably is even in this setting. But there are things that are huge in people's lives and that was one of mine. I think it is for all men with MS. We want to be able to go on a date, and being that we're all dogs, dates are just foreplay where you use your wallet anyway! I know that's off the cuff, but guys, really?, don't you think about it somewhat that way? Maybe I'm just a perv. but I'll tell you, when that starts getting messed with, it rocks your self esteem hard. I'm in my 40's and it's still all I think about! I love that though. I'd rather think about that than MS. But I digress. Those of you that know me well know that I can say anything at about anytime and it's also true on here. It's one of my biggies and I promised everyone I was going to talk not about the science of all this, but how it affects my life, and that's how it's been affecting it. If it takes up a big amount of my time dwelling on it, then it's worth posting how this procedure affects it.

So there! I am needing to report about an adverse event that happened during a procedure. I know all the details, but what it came down to is this. Dr. Dake is using smaller stents now because of what happened to a few of our shoulders. Well one guy had a stent that was already placed earlier in the procedure come loose. It did it when one was put below it and it migrated all the way to his heart. He's doing well now, but they did have to open him up to get it out. That really sucks, but we are, after all, learning as we go. So since I have to be talk about the good and the bad, I have to report that. Now how does that affect MY opinion of all this. One answer, it doesn't. I'd have done it anyway knowing that, but that's just me. Someone else reading this may say "whoa, I need to wait until they get this all worked out." I couldn't wait. I was looking at home modification and a power chair. So I was glad I did it not even knowing what the risks were, but I can tell you with all confidence that I'd still do it again. I told one of my friends I talk to that I don't even know where my cane is. I still haven't found the damn thing and hope I just left it somewhere if you want to know the truth.

I am going to be going up to Detroit in about a week and a half as I alluded to before. Me and the person who went immediately after me at Stanford are going to get the MRI-SWI and see how much iron deposition we are looking at. If that's the culprit, then we'll see a snapshot now, and then one in six months to see if my drinking straw like jugulars open things up enough to allow some of the iron deposition to reduce. We really don't know if that will do it or not. Will it take some sort of agent/chelation to get it out, or will it just be up there and it just is what it is now? That's what we aim to find out. So I'm fired up to be going and doing that. Now that my stenosis is fixed, I'll do anything else to help us discover what part of the puzzle this is. Is it "IT"? We don't know yet, but we won't find out if we don't keep forging ahead. At some point I also want to get the doppler put on me by someone who knows the protocol as there is still a disconnect between us and Europe in the use of that technology and it really has to do with training as we have easily as sophisticated devices in the USA as anywhere in the world. Well I'm off to watch the University of Cincinnati win the Big East title by beating up on Pittsburgh (I hope!). Wish me luck in Michigan and Merry Christmas everyone, I may not post on here again until the new year. Shit's gettin' ready to get busy!