Wednesday, July 15, 2009

It begins again (I hope!)

Well I made it through. Dreadful night and morning as we discovered, on the fly since I'd never taken either one, that I don't tolerate morphine or percocet well. So I'm doing my recovery with Rx Motrin (woo hoo!) But since they were allright until I sat up and all the blood rushed out of where it was pooling in the supine postition, I'll maybe take a percocet tonight as the Motrin isn't as good on the neck pain, which absolutely sucks, but the others before me only took a week or so before most of the pain lapsed and reported that it was better each day.

So to say that this was a trip would be a massive understatement. I felt like I was on the set of "House". There were TV monitors all in front of the doctors and they didn't even look at me! It was wild. And you're awake so you can hold your breath when you need to and things like that. They go in through your groin (no jokes Beek) and when they put the stent in you can hear it from the inside of your ear! I needed two stents in my right jugular and had a weird anomoly in my left jugular that he is leaving alone until my 2 month check up. This guy is a world renowned interventional radiologist, and he'd never seen this particular deal. Don't I feel special. Well all I can report on is that I'm recovering from pretty major surgery now. Nothing like getting your ribs cracked, but it was 2 and a half hours long and you are absolutely whacked when done. So if this helps my MS, I won't know for days, except I may venture out in the heat and see how I do tomorrow. That's probably not wise, but I feel so much better than I did this morning, it's sort of energizing.

My neck hurts like hell right now so I'm not going to post much, but me and my mother chronicled it all with pictures and everything so when my neck is up to sitting in front of the 'puter, I'll post more. I feel sort of narcissistic posting about all this that's happening to ME. Like I am all that and anyone gives a damn. However, I remember hanging on every word of Tim Wesner's blog detaling that stem cell trial that I was in that flopped. If the 400,000 or so folks who have it are as non-plussed with the current therapies for MS as I am, then I actually feel sort of duty bound to share. If this actually works? I don't even let myself fantasize about it as the fall would be just too far if it doesn't. The only things that sneak through are thoughts of what I could be again to my beautiful wife and daughter. I love them like I didn't know was possible. But I suppose since I did that and am now doing this, that if it doesn't work I'll just say "NEXT". You have two choices with this shit. Stay uneducated about the new stuff, or just take the oh so marginally effective FDA approved therapies that don't do anything for people with advanced MS and watch yourself detariorate with a ringside seat. Looking back, there just aren't too many people who have advanced MS that WEREN'T on the therapies and look where we are now. In the proverbial shitter. So as I have described my take on hope, I have to live it and the current drugs don't give anyone who's had MS for years any hope and they cost a fortune. When stuff like this gets posted on the MS forums that are moderated by the biotechs, they delete them. They are just SO all about patient care, eh?


  1. Lewis We Love You and all of us wish we could help some how. All we can do is pray. AND WE ALL DO!! Everyone also understands that it is difficult to be a patient and a reporter, but blog when you can because alot of people are waiting for every word.When you get home you can show us how the procedure was done with Beeks groin.LOL Love you Geno

  2. Praying for you! I am so hoping to hear some positive news. I know each and everone of us feel the same. Feel good. Anne


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