Wednesday, January 7, 2009

When A Month Lasts An Eternity

I had all of these great ideas to write about for this post but, like a dummy, I forgot to write them down and now I'm sitting here, staring at my computer screen, trying to figure out what those great ideas were. This whole forgetfulness, that I'm told is called MS Brain, is such a wonderful thing to have.

I start my Tysabri injections on Friday. I have a lot of hope that this will help me to become a somewhat normal person again. Well, no that's no right. I was never a normal person.

Hows This? I'm hoping that it helps me to be some of the person I was before the whole MS thing came along. That's better.

I will say that being off of any MS Therapies has been a hellish ride for me.

**On a side note, are any of you on Tysabri? I would love to hear some feedback on what it's like, how you're doing, what to expect immediately after the injection, etc. etc.**

For the past month and one week, I have been an all over the spectrum mess.

In the beginning, I felt horrible. I was fatigued to the point that I couldn't keep my eyes open, my entire body was in immense pain, and I could have ripped the head off of Mr. Rogers just for asking me to be his neighbor.

I've had three flare ups where my speech was affected, as well as my walking, and sleep. I find it kind of ironic and somewhat cruel that this disease can make you so fatigued and you have to fight through it during the day and simple tasks, like emptying the dishwasher take you an hour and a half. Then it's finally time to go to bed and suddenly, you're wide awake and cannot lay still so you get up and go watch TV until four in the morning. Good times.

I've had some really good days too. Days where I could go, go, go without needing to sit down for a second. I did so many errands, organizing, cleaning, and laundry that you would have thought I was on crack.

And you wanna hear something funny? After not being able to do a lot of things for yourself for a long time, I found myself excited, almost giddy, to do laundry! Seriously, I can't explain why I was excited about it because normally, I hate laundry. I would go into the laundry room like I was walking into a pit where I would have to wrestle a lion.

But on these good days, I was a laundry fool. I washed, I treated for stains, I even separated the whites and used bleach! And then I would wait and pace, and keep going into the laundry room to see if the washer was done, always disappointed if it were still going. And then I did the same with the dryer. I hung clothes on hangers, folded the others in pristine folds, organized my daughter's closets so that it would be easier for them to find their clothes.

I was laundry crazy!!

But of course, after two or three days, the good days came to an end and I was back in bed, watching Snapped marathons on the Oxygen channel and making the hubs nervous. At one point he even said to me "If you're planning on killing me, just know that you're a terrible liar and you will get caught." to which I replied "Honey, I'm not watching this show for ideas on how to kill you! All of these women got caught for crying out loud!" For some reason, that did not put his mind at ease....

But I have to say that my proudest accomplishment thus far of this month happened on my other blog. You can check it out here.

Here's the scene:

It was one of those nights where I couldn't sleep and I was in a lot of pain. So, I got up, took one of my pain pills and headed into the living room to watch some more episodes of Snapped or something. Of course, the show you want to watch is never on when you need it so I picked up my laptop and was surfing the web. By this time, the pill was kicking in and I was feeling a little loopy at best.

One article lead to another and I had come to the conclusion that some, notice that I say SOME of the more extreme animal rights activists groups are a little...well...insane.

Now, don't get me wrong, I'm all for the protection of animals and all of that but there are some cases when I think they've gone a little too far. I'm not going to get in to it on here, you'll have to go read the post but lets just say breast milk in Ben and Jerry's Ice cream is not a good idea.

Long story short, I wrote a post, not naming any names, about how funny I found some of these extreme groups ideas. (Who goes to KFC for a vegan meal?? Anyone?)

Of course, the next morning I woke up thinking that maybe that post might have been a bit offensive. I had no idea how right I was! All I can say is that I hope the Vegan Commenter isn't homicidal.

So, yeah, I made someone mad and it might not have helped that my faithful blogger friends left comments for her like:

*She needs a good cheeseburger, then she would chill out.

*Did somebody just mention veal? Oh, now my mouth is watering!

*It sounds like she's going through steak withdrawal.

But secretly, I have to admit, I'm kind of enjoying it. But don't tell anyone!



Hey, good luck with the Tysabri. Hope that this works out well for you. :)

Anonymous said...

"**On a side note, are any of you on Tysabri? I would love to hear some feedback on what it's like, how you're doing, what to expect immediately after the injection, etc. etc.**"

Last month I had my 17th Tysabri infusion, and before those I was on Rebif. I can say with confidence that I much prefer Tysabri. I can't say that the PML risk isn't a concern, but overall I like the 1 needle a month instead of 12 or 13.

The infusion might give me a mild headache and sitting in one place for 2 hours is a drag, but I haven't experienced any real negative effects.

Overall, I am pleased with Tysabri even with the PML risk. But anything worthwhile always has an element of risk, right?

Good luck to you with the new medication. I can only hope that it works a well for you as it has for me.


R.W. Boughton said...

I hope I'm not overstepping bounds, but, uh, if you have another of these 'crazy for laundry days' again soon, can you drop by my house? I think you would be very pleased at the pile of clothes I have just waiting in the laundry room.

Because you're absolutely right--sometimes the laundry or the dishes or the dusty floor are just way beyond the MS fatigue. It's so hard for other people to understand how this feels, and so I enjoy at least having a fellow sufferer echo my own feelings.

Bald Ben said...

My wife doesn’t understand the shear pleasure I get from goading people. I generally mean no harm, but can I be held accountable for someone else’s sensitive psyche? Truth of the matter though, you generally just have to hang back and in their enthusiasm they end up tying themselves up. I love zealots. Just give them a good poke every now and again, (and that’s really just for fun) and you can have a real enjoyable day. It is my own little version of Zen.

I have not had the pleasure yet of offending anyone on my blog. I thought I had something on my family blog, but it turned out it was just my brother being a jackass. Good for you for standing your ground. I have been in a community of vegetarians and vegans for a long time, and Lord I know they can be an opinionated bunch. To be fair though, there are a lot of great health benefits to be garnered from such a life style. But like I always say, “all things in moderation” (I didn’t coin that, I think it an old saying.) There is a school of thought that us MS people should cut out a lot of the saturated fats i.e. butter, milk, cheese, etc but animal fat is actually supposed to be very good for us, helps the motor neurons. So I suppose what they are saying is we should be vegans who eat as many animals as possible. Ironic, right?…..Herd control.

My favorite was always, "Do you know we are the only species that drinks milk past infant stages?" to which I have to point out if other animals had opposable thumbs and were able to figure out the process of pasteurization they’d all be drinking the GDed stuff. The cows and goats would be in some serious trouble then. I would bet the cats would end up unionizing and having some sort of milk cartel. It's all relative I suppose.

Denver Refashionista said...

Well I'm vegetarian but I also wouldn't go to KFC for a vegan meal. I'm still laughing.

I hope you feel better soon.

Tracys Ramblings said...

Lisa-Thank you. I haven't even taken it yet and I've already got a gripe post in the works! (not about the drug but about an office staff made of monkeys!

Burke- Thanks for your input, it always helps to hear the good stuff!
When my neuro and I discussed the PML risk, I thought about it and decided that if it gives me back any bit of who I am and lets me mother my kids, then the benefits outweigh the risks!

R.W.- I don't like to think of us as a "group of sufferers." I much more prefer Braincheese's "Shortbus".
No, really, I avoided anything or anyone who had anything to do with MS for my first three months or so. Everyone, including my neuro, kept telling me to even join an online group just to get the support.
The first conversation I had with someone who also had MS was better than therapy for me! And when I told my now friend that, she said "For us MSrs, you just don't understand unless you're in it."

Ben- Whew! For a second there I thought your comment was heading towards "I'm a vegan and outta here!"
I just think that after all this time, and growing opposable thumbs, we should all agree that our choices are our choices and all get along!

Denver- I'm not saying that there's anything wrong with being a Vegan (please come back!) but Thank You for getting my point! I wouldn't walk into the Waffle House lookin for pancakes (although they probably have them, the Waffle House rocks). But you got my point, I made you laugh and you didn't curse or threaten not to come back!
This could be a record or something!


I prefer to call female non-meat eaters with angry affects, "VAGITARIANS"...was that audible?!? LOL

Linda D. in Seattle

Anonymous said...