Monday, May 25, 2009

I like walking. It kicks ass.

Let me take this opportunity to skip the whining for once and say something positive: I can walk (again) and I like it. Thus far, MS has only "borrowed" things from me and I'd like to say thanks to the hobgoblin for returning the items it took, still relatively undamaged. I know I tend toward ranting and cursing so I'm warning you that this blog will not be that. Don't go looking for rainbows and unicorns here or anything, but today I've got good things to say.

I've managed to come through another exacerbation without any noticeable permanent deficiencies. I've got the feeling back in my feet (except around the toes) and they aren't burning anymore. My legs are back to working reliably and the crushing fatigue has finally lifted. Now that I'm not so surly and defeated I can admit again that I have it much better than others and now find myself a bit ashamed of all my carrying on.

I have found myself in a better mood lately, but I'm a little suspicious of it's origins and timing. Is it the nortriptyline that I've been taking? Am I getting used to this bizarre schedule at work?
Even my husband has noticed my "better mood" lately. Wink wink, nudge nudge. I'm a bit wary because I don't think too much has changed. I'm still stressed about all the usual things. And I'm still not sleeping so good, but I haven't been sick, which is weird. The typical stomach bugs and colds and the like have plagued my friends, family, and coworkers, but I haven't gotten my share. Very strange. Makes me think that I must be on the placebo for the Fingolimod trial because I get the impression that the folks on THE DRUG catch every little thing.

I have an uncanny feeling of gratitude lately. I'm grateful for my job even though it sometimes sucks. I'm pleased as punch with my mother for taking care of the kids this summer, saving me tons of money and worry. I find myself smiling during the half mile trek from one end of the hospital to the other because I'm not dragging one of my legs or concentrating on landing. every. single. step. And I'm really quite pleased with how easily I can avoid the hazards of manuevering around the oxygen tubing and urinary catheters and velcro straps and IV tubing strewn around every single patient.

I can walk, and that's rad. I walked across the causeway in the middle of the night with my husband just for fun. I walk around the grocery store without having to lean on the cart the way I remember my grandmother doing it. I'm not staring enviously at House's cane anymore. (I actually started to imagine how much easier walking would be with a cane during this last relapse.) I'm going to New Orleans in July (yes, JULY. Yes, I know it'll be hot.) with my husband and I'm gonna walk all over the French Quarter so I can show him all my favorite places. I can again wear whatever shoes I want without worrying which ones will trip me up or be too "quiet" to help me figure out when my foot has hit the floor.

Being able to walk is the shit.

9 comments:

TickledPink said...

Take heart! Just because you didn't catch every little bug that came your way doesn't necessarily mean you aren't on the real deal.

I'm in the extension phase (since last Sept.) and KNOW I'm on the real stuff, yet this was a pretty mild winter for me as far as head colds and stuff goes. Everyone around me was sick and I hardly caught a thing. I think I got sick at the end of Jan. for a few weeks and then a brief head cold since.

I think the side effects of increased URIs and UTIs gradually taper off after the first 6 mo to a year.

And maybe just possibly that great mood you are in is from the drug! I read some place early on in my trial (at least a year or more ago) that researchers had noticed Fingolimod has an antidepressant effect. Woohoo!

pUNKrOCKfairy said...

Thanks Jeri! I hadn't connected the UTI's, maybe it ISs the real thing. Thanks for finding me a silver lining.

BRAINCHEESE said...

Yippee, skippy...or skipping, if you are doing that, too!

Ain't it funny how much we are unconscious to so many things in our lives until something is taken away? Much to be thankful for...

N.O. in July? Is there something WRONG with that?!? I used to visit New Orleans MOSTLY in the summer because of the liveliness on the streets...course I only lived 5 hours away in Houston where EVERYTHING is airconditioned year round, so I guess I was used to the heat then. Now, I'd probably melt like the wicked witch if I went there in July!

Bald Ben said...

It's great about the walking. I only went through a short spell of not having mobility, but I do not want it back. That shit is for the birds.

What's the deal with your sleeping? I can't sleep either. If I can get four hours consecutively I feel accomplished.

pUNKrOCKfairy said...

Still haven't sorted out the sleeping issues at all. My schedule is effed up so I know that doesn't help with getting to sleep at any particular or consistent time. But why do I have to wake up all night (or day) long? This is a new problem for me. I'll let you know if I come up with any solutions.

Lisa Emrich said...

So good for you. Walking is good, getting around tricking stuff at work is good, walking at night just for fun is good. Yeah!!

Also, my sleeping is all screwed up lately too. What's up with that?

Bubbie said...

Yeah! I'm doing the grateful dance too! I've been cane free for almost a month now. I haven't done that in three years! Knock wood, throw salt, thank the goddess...
It's so hard to believe when in a flare that remission is possible. It's a strange ride this disease.

Have Myelin? said...

Ohhhhhh! New Orleans! HA! You goooo! I remember Bourbon Street, it has its own smell! And the jazz bands are to die for. YES. Don't forget to stop by Cafe de Monde for beignets! Ahhhh...

Walk your heart out. I should do that since you and Braincheese are putting me to shame.

Lisa Jo Rudy said...

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http://www.pharmabiz.com/article/detnews.asp?articleid=51683&sectionid=
This is great news from sanofi-aventis about their investigational oral medicine for MS, teriflunomide. There is currently a worldwide clinical research study that is evaluating teriflunomide for relapsing forms of MS. Click here for more information: www.tower3.msstudies.com.

Lisa