Tuesday, November 10, 2009


So, I am sitting in hospital right now getting my infusion of Tysabri and thinking about things. I have not been adding much to this blog. I have been more scared to write about anything and having problems putting it into words. I think I will see about getting some voice recognition software to make this easier.

I went to my friend's 40th birthday party this past weekend and saw several friends that I have not seen in nearly 20 years. It was very nice to see them, but is was a bit of a double edged sword. They were a bit confused by the cane I was using to get around. It was my old one since I LOST my new one! Anyway, once they found out why, I got a lot of pity and a lot of advice as to what I should do. Things like how I should just "suck it up" or "enjoy the time off work" or how it was such bad luck.

The double-edged part comes with the fact that I got to see my friends and how well they "appeared" to be doing. But, hearing about their jobs, their homes and new toys was pretty much a slap in my face. I was pretty upset about it. I actually drove the 3 1/2 hours home (leaving at 2:30am) afterwards. I had drank very little since there is an interaction with my meds, so I was safe to drive and I generally go to bed very late anyway. I made it home fine.

The word "LUCK" has come up quite often lately. It has been mention that it was just bad luck that I ended up with MS and that I should just power through it (???? what are they thinking). Or, it was bad luck that I got MS but it will get better eventually (???? ya, but what do I do in the mean time... the eventually part is very difficult and there is not a timer on it). And, other ignorant (dictionary meaning) remarks. A LOT of "Sorry's" and a lot of pity for me. I appreciate the concern, but concern is not a lot of help.

I have been thinking that my LUCK (bad) and the problems it has caused is really my responsibility. I am starting to think that it is really not fair for my wife and kids and how much better off they would be if they did not have my LUCK as a burden on them. Don't start thinking that I am trying to be a martyr or something, that is not the case. The problem is that I am having a hard time figuring out how to ease that burden on them... Suicide would make everything worse. Leaving them would probably be just as bad because of the guilt they would feel. I can try to make everything better as best I can. But, my best is not very good anymore. I just don't know.

Sorry, those are all the thoughts I have right now.

Tuesday, November 3, 2009

I am back

It has been a long time since I have written and there has been a lot of stuff going on with me including pain, depression and life. I really don't feel like writing bunches of stuff right now, but I thought I would at least chime in.

I have been having a lot of pain in my head and have been trying desperately to take care of it. I have been prescribed about every non-narcotic drug out there to try to take care of it, but they have not been working. This leaves the narcotic drugs like vicodin and percoset. They are highly addictive, so I am not a big fan, but when you hurt and nothing else seems to help, you are stuck with it. The thing that most people don't get is that when you are in pain, you want to take care of it right NOW.... I can't be given tylenol or advil and wait a half an hour (which seems like a lifetime) to see if it will help, when I know it won't. Sucks.

The headaches a lot like debilitating migraines that are very sudden, localized and unpredictable. Plus, I cannot take migraine medicine since it has negative interactions with my other meds.

Anyway, that is my time today.