My new War!

My last infusion that was twelve days ago and I'm feeling good for the most part except for a anti-social fit that I had this week. I'm considering deleting my second profile on Facebook because it's more trouble than it's worth. I made that profile to learn and to share information, now it seems that all that happens is I see people denigrating my treatment choice. I take it personally because Tysabri is seen by many as being dangerous because it carries the extra risk of PML Progressive Multifocal Leukoenephalopathy. It's an extra burden that I'm willing to risk it because even after twenty two infusions I FEEL GREAT! I had my little fit because it seems to me that the biggest opponents of my treatment are believers of the liberation treatment or CCSVI. It's very disheartening to me at times but I try to look beyond it. I'm not against any treatment but I come to realize that people will still have their opinions- hence my dilemma. My concentration has been further blurred on FB by OTHER causes, although very worthwhile it has shifted my focus from what I'd made the profile for, no more craziness. Make of this what you will, I'm not trying to argue I'm just tired of bullshit

when will I just grow up

I'm not really a whiner, but I think prolonged exposure to Facebook has turned me into one. I have become complacent in a virtual world, that's the downside of being a virtual (and literal) hermit, when no one cares what you say you shouldn't go back and complain that they aren't looking. I had started a second profile on Facebook to speak with MS friends and different folks who have health concerns in common but I'm regretting that choice. I hardly get spoken to on that second profile, I guess some of that is my fault since I made a big deal about getting a barrage of game invites.I wouldn't want to speak to me too,  After all is said and done I think slowly deleting my 2nd profile might be the better option, either that or I guess I'll have to sack up and learn to live in a world of invisibility.

December and January were too dark

toward the end of December I made my pilgrimage to go to Ohio to see the inlaws with my wife, after being there for a few days I received  word that my uncle passed away. It was unexpected, he passed away in his sleep, and being a thousand miles away from my family really didn't make me feel too great. I started the new year quietly with my wife and trying to adjust my on-line presence (per my NY Resolutions). And I can't help but feel that I really haven't done much regarding making any changes to what I do when I come online. Last August I started a second profile on Facebook to set apart what I do. I guess I'm amending that resolution to be that I will be online less, I'm not really a "guru" (or as I have proclaimed myself at times) MSNinja. and when I sign onto Facebook it just seems that all I do is say Happy Birthday to twenty people and poke at others. I'm not really quitting per se, I'm just going to try to focus more on me.  

Wrap up and some food for thought

Thanksgiving is almost upon us and I've become introspective. I continue to be thankful for good progress and for limited pain these past few months, I had some shoulder pain a few weeks ago that was caused by me slumping my shoulder. I use that instance as a reminder to remember to walk tall (cane included), and for the most part I feel great. I'm thankful for my body continuing to remain balanced (frontwards/backwards at least) After the run-in with shoulder pain I had to struggle to remain motivated,  at the end of last week I accidentally forgot to take my morning pill and vitamins, I really didn't feel anything wrong through that day but the next day I felt as if my life was in slow motion. I'm thankful that the situation there was easy to fix

I'm also thankful that I can continue to be there for friends on Facebook, aside from games, Facebook is a great tool to spread awareness and to motivate. I may not be THE go to guy on FB but just being there is ok with me.

It didn't occur to me until now, (a few hours after I posted this) I'm really just thankful that I'm at my current level  of disability as opposed to being further incapacitated, it may sound odd or even cruel to my fellow MSers but I don't intend it that way. Like everyone I'm just trying to power through (both to show that achieving a sense of wellness is possible, to fellow MSers) and for myself being ambulatory is a good thing, self esteem -wise and safety-wise.

We are family!!

I have been on facebook for a few years now but only recently did I decide to to "friend" some other members of our community. No special reason why I held out really, I just didn't want to come off as a 14 year old on myspace trying to collect friends. I soon got past that thinking when I remembered that communication is vital! I'm fortunate to have a support group but not alot of others can say the same. That's also kind of why I like to do this page. commiserating can occupy some time but it can also brighten up someone Elses day. Personally I have friends from all over the world, some friends that I can only understand thanks to Google translate. I have been learning alot and I've found it to be a great chance to share ideas and just talk. We've all been thrust into a situation together and we're trying to confront it, kind of like a Grisham novel without a lawyer.