Monday, March 14, 2011

If you want to learn about CCSVI procedures....

Go here! This is an event in Chicago that some of my friends have set up and it will be very informative, but they need RSVP's soon so they know how many folks are coming!

http://events.r20.constantcontact.com/register/event?oeidk=a07e3hqxrla3e458582&llr=pflw7ieab


So get off your butts and register!

Wednesday, March 2, 2011

Going back for Round 3

Well it's been a while since I updated on here. Things got busy for me personally for a while and I really didn't have much to talk about since I've been distracted. Getting the new puppy has been a blast and sobering all at the same time. She's adorable and a good girl (with lots of energy) but she is hard to run around after when you can't run! At any rate, I'm spending a little coin to have her trained pretty hard core since I just can't kneel down and take that much focused time to spend with her.

Well as lots of you know, I retired. I was major league stressed about getting approved for disability also. I had actually been told it may take up to 18 months to get my first REJECTION! Well I got approved in only 3 months! I guess it's because there really wasn't any question that it was time. I pushed it past the point of sense to retirement that's for sure. But at any rate that is major stress off my mind since I went from full salary to nothing the day I retired. So the amount of boxes I have to check before I relax is becoming smaller and smaller. That's a good thing! Plus baseball is getting ready to start and since I feel 70 years old anyway, I may as well act the part and listen to the transistor radio all damn day. I do love listening to the Cincinnati Reds on the radio. It's good stuff.

So now what? As most of you also know, I am getting weaker and weaker in my left leg. So much so that it's starting to not want to work by, oh, 10:00am! I mean I can get around, but I do one thing and it's take a protracted rest before I can do much else. Thus the sobering part of raising the puppy. But it's worth it, we are fast becoming inseparable. She is such a little lover. She sleeps a lot and won't sleep unless she's in the same room as me; usually with her head rested on my feet or something. I'm really bonding with this dog and it's all due to how awesome my last dog was. She taught me what pets are really about. Too bad I had to learn to be patient and understanding ON her, but she didn't mind, she was the best. I'm fast becoming that weird person who talks about their damn dog all the time. I guess there could be worse things! I'm just home all day long with her and she really is becoming very important to me.

So what's the title of this post all about? Well as readers of this blog know, I have it in the back of my mind that we missed what I think to be is the main culprit of what's going on; my azygous vein that drains off my spine. I just didn't feel like I could leave this effort feeling like we may have overlooked something. Not really overlooked, but didn't know what was what yet. The guy who did me just didn't 'find' nearly the percentage of dysfunction in patient's azygous veins as 'other guys' who will be doing mine have. Not even close.

And since my disability comes from things going on in my spine, I'd just have felt like we'd have left too many cards on the table. So as I was in the middle of writing this post, I got scheduled in to have this done! Hootie Hoo! I feel weird about this one though. I'm not nearly as hopeful that this is going to fix what ails me since the first round really didn't. Well I improved, but I'm back to going downhill slowly but surely, at least in my legs. And that's getting tough. I just don't have enough strength to get through the day anymore without significant amounts of downtime. I'm still walking, just not far at all now. I used to say, just not very far. Well this is a whole new level of that. By 10:00am, I'm ready to take a 2 hour nap to recharge my leg batteries. It sucks, but as I've always said, I have MS, this is what happens when you have MS. This is the disease process, so I can't go all batshit and get all let down if this next round doesn't 'cure' me.

So this next round is so I can close the book on this if you will. It always nagged at me that we didn't do anything to my azygous vein. Well we might not again. Dr. Dake may have had it all right. However, he had not seen that many patients to that point and these guys who are doing me in early April have seen well into the hundreds of cases. I may never close it all the way as there may be tuning required, but I just feel like I have to finish the race I started and I just don't feel it yet. It's possible that I'm just crazy jealous of the stories I read on Facebook about people having MAJOR improvements. And also ones you can turn on and off by restenosing and then fixing the restenoses. It was never like that with me. I never had it come on and felt like it was a discreet enough event to even notice that something was wrong that needed 'fixing'.

So I wait a month now. I just hope the progression doesn't keep up like it's been in my legs. They are truly getting weak and I wonder how many more days I have left where I still accomplish basically what I wanted to when I woke up. Granted that list has been scaled WAY back over ten years of losing function, but I got used to staying the same for so long. I started to have 'disability memory' where the level of my function was getting in tune with the level of what I wanted to do. That may not translate very well, but it's like this. You want to do X, but you only get Y done and you get all bummed out since you could do Y just a week prior. Well staying the same for so long allowed me to understand what I could do and it started to be innate if you will.

Oh well, I have to tend to Lilly Belle. I haven't had to clean up a single accident today (knock on wood) and that's pretty good for just shy of 12 weeks old! Stay tuned for results of my procedure! Hopefully my lazy butt will make one more post before then.