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

First week of April is done

I'm kind of mad, my week has started out with a screeching halt, for the past two days I've been walking around kind of wobbly and in more need of my cane, as opposed to strolling about the house. I stayed home from the gym so I wouldn't aggravate anything further. I know I've mentioned this before but I tend to peter out just right before my infusion is scheduled, it's more of a psychosomatic reaction that I'm having. The important thing is to jump back on the exercise train right after my infusion. I have a readathon coming up and I want to feel tip top, I plan on doubling my B12 pills that day.

ongoing adventures

kind of a continuance on my last posting, I had stayed home rather than go to the gym because I've been having some joint pain due to my .... impromptu 2 mile hike last week. to make matters worse for me my specialty pharmacy was switching and there was a delay in my tysabri being sent to the infusion center. After making alot of phone calls to shake peoples cages a bit I had finally managed to schedule infusion #19 a full eight days after the 28-35 days window between infusions. I was really starting to freak out but I feel greatly alleviated today, I feel a psychosomatic sense of strength once I finish up with the infusion. I say it's psychosomatic because that isn't the way that tysabri works but darn it, I do feel like Popeye once I'm done and I'm resting at home.   Remember to never give up when you are being given the run around by the drug companies or in this case specialty pharmacy.

I don't celebrate

Just as the title suggests I won't be celebrating my latest anniversary, it has been two years since I was officially diagnosed as having Multiple Sclerosis. I can remember it as it were yesterday, I was in the hospital because I was I kept falling at home and I was completely zapped of strength to stand back up not to mention if I were to manage standing up, it was doubtful I could keep my balance. My wife and I were still a little clueless as to what could be wrong, but the day after being admitted I was alone in bed when the attending neurologist, and might I add the Dr with the WORST bedside manner in the world, she waited till I was alone and half asleep and just came out and said Yeah, It's MS. The next day in front of my wife she started going on about the possibility that it could be HIV. Thankfully it wasn't and thankfully I now have a neurologist that minored in Tact and bedside manner. In the past two years I have tried my darnedest to get educated about MS and try to share info (as is seen here)

So in a way I guess I've just lied, I should celebrate the fact that I'm alive and the fact that the MS hasn't really progressed, I had optic neuritis that went from a minor brown  obstruction in vision to just one eye being a tad crossed, or rather a bit off center (as you see in most MSers).

Treatment

For a while now I've tried my best to not directly address my treatment viewpoint on this blog, I try to not lean too much in one direction because most MSers get really serious about their chosen treatment. It's no secret that I'm on Tysabri, I try not to mention it too much because I was once told on Facebook that I must have some "big balls to take that poison" Since then I had been dancing around the topic of mentioning treatment choices (at least somewhat). To me it mostly seemed that the main group of anti-tysabri people are proponents of CCSVI. I myself have no desire to engage in a pointless war of words with anyone I think it won't help anyone. Ever since I was in physical therapy following my initial hospital stay I've tried to dwell in positivity, there were a few people in that rehab that were just too angry so I had made a conscious effort then and there to try and focus on my health and not feel bad for myself. As for my REAL feelings on CCSVI, I think its a good thing I want MSers and those afflicted with other problems to benefit, is it right for me now? No, My tysabri may not be the choice of other people but it's mine, I'm at a point where I can walk without pain and I can drive and remember things without too much concentration. In the future it may be an option for me that's why I try to keep open ears and learn from other bloggers and Facebook friends, the other anti-tysabri group seems to be the holistic/anti-drug lobby, I tend to be more puzzled here because folks in this camp ALSO call Ty poison but start to talk alot of stuff about Biogen and go on and on and on sounding like conspiracy theorists like we're being kept sick on purpose. The thought that I'm being kept sick on purpose is just dumb, we're allowed to be mad it's our given right as Americans to be mad. You can have a differing opinion if you try to post it I may not publish it. If you do respond remember that this is just my opinion

taking a walk

after I was diagnosed with Multiple Sclerosis I first relied heavily on my walker, in July of 2010 I started Tysabri infusions, I believe that those infusions (along with my vitamin supplements, and determination to not fall) have lead me to using just a cane and being able to work out in a real gym and not a phys. therapy gym. I'm not wearing my AFO in this shot (I wear it to the gym) 

How I walk

Walking is always taken for granted by most people. Once a person deals with an illness such as Multiple Sclerosis it gives you a renewed sense of how important walking is. As soon as I was discharged from the regular hospital I spent almost 2 weeks in inpatient physical therapy being retrained on something I had been doing for about 29 years. It didn't come easy to me, I won't lie I had spent alot of time balancing in front of the ballerina bars until I didn't need two hands to do it. I started out like most folks lumbering forward like Frankenstein's monster. I was fortunate to have my own cheerleaders )my wife and family,even my cats)(nothing encourages you like a cat freaking out because you're all wobbly over it)

I embraced my franken-walking no matter how silly it looked to the unknowing public. With continued phys-therapy and continued tysabri (natalizumab) I believe I have progressed to baby step walking where my joints are a little more co-ordinated and I'm more confident that I won't fall on my face. I have been using a cane rather than the walker (when strength permits) and that's why I refer to it like baby walking. Life is going good and I'm feeling stronger, and no squashed cats!

life in TV

anyone truly knows me can tell you, I am a pop culture junky and severe tv show addict. Having alot of free time I have been able to view all of "24" and I'm in the middle of watching lost, in my opinion those shows have little parallels to my life with ms. How so? 24, is the tale of CTU agent Jack Bauer fighting all kinds of terrorists and baddies, I equate that to the MS trying to storm into my brain and start trouble kind of like a terrorist or anti-american bad dude and. Then it's up to Jack Bauer and CTU or my Tysabri/other meds n vitamins to bring em down and set things right! The other parallel is the TV show "Lost" this show if you haven't seen it is kind of hard to explain. it's kind of like a serious non-comedic version of Gilligan's Island, well not really but you should "wiki" the shows. Thats not as direct as my "24" references now but I find similarities on how everyone with MS is just going on with life all nice as can be (pre-MS) like life before the plane crash then all of the sudden BOOM we're on the island kind of like how some of us have the first crash or iniial incident where we fall or have vision problems. Then we deal with new problems like optic neuritis kind of like the smoke monster or the dharma bunker. Flashback scenes are always interspersed with the daily action, similar to how we might try to over investigate the time that lead up to the diagnosis.

confessions of a swiss cheesed mind

I wrote out an extensive posting yesterday right before blogger crashed and took my posting down with it, "Save" be damned. I started off by confessing that in the seventeen months since I've been diagnosed, I have gone through a total of four MRIs. I have never really viewed my MRI results I've pondered why that is, Perhaps fear of viewing my own brain sliver by sliver?  the claustrophobia part of it really doesn't bother me, it's more of the being subjected to a 2 hour bizarro concert of hums whirling magnetos in my ear. I had my fourth MRI this morning and I've decided to "man-up" and finally take the plunge. I wrapped up my morning by taking my monthly tysabri infusion (number 10!), and so far I'm feeling good. I am achy from the 2 1/2 hours stuck in one position not moving, thank God for couches!

fridays update

I had my "invigorating" tysabri infusion yesterday and I had my physical therapy this morning. For the past few months I have been training on a cane, I've become quite good at getting around. My ultimate goal is to rely more on my cane and  less on my drive walker. I've been trying to build up a facebook group to build up a bigger MS support Network

tune up part 2

the infusion went well, the nurse got my IV line done on the first try. The session was done in less than ninety minutes. The tysabri felt cold going into my veins but it was a successful infusion nonetheless. When I got home I noticed I was a bit more alert then I was before, I know that the drug isn't caffeinated but it just makes me wonder

tune up

according to my infusion nurse my tysabri should be administered between twenty eight and no later than thirty five days. For me I'm on day thirty five about two and a half hours away from my infusion and I'm feeling sluggish. I know that tysabri doesn't work like an energy pill but to me it almost seems like it. My sluggishness is not an exacerbation and it doesn't effect my walking I don't think it's PML

thoughts of the week and motivation

I've been having success at my physical therapy, my balance continues to improve, partially because the Tysabri (natalizumab) is doing it's job in fending off the renegades who are trying to slow down my brain and I think the other part is my choice in workout music. I am not trying to be sarcastic with that last thought, being fully motivated is of great importance especially in my case and I assume the situation that many are in. Getting up and moving to a song is much more doable than trying to do that to the Fox news channel. My other thoughts lay with CCSVI, I subscribe to Google Reader that sends me Blog postings on an hourly basis, that along with Facebook gives me alot of postings about ccsvi, from my side or as far as I'm concerned the ccsvi or Liberation procedure is still not proven to me. The Pro and Con camps have alot to argue but I still remain against only until its more widely accepted. I know that tysabri faced its problems with JC virus and pml but the FDA cleared it. soooo that's this week so far from me