Sunday, December 6, 2009

Blowing the dust off

And blogging again.

Sorry I let 2 months go by without so much as a peep. Rumors of my succumbing to side effects from the clinical trial drug have been greatly exaggerated (to paraphrase Mark Twain).

Since we (I) last spoke, I've just been busy with life. Living at Mom's means doing all those normal daily things like cooking and cleaning and doing dishes and stuff on a more regular (like normal people do) basis.

We no longer live smack dab in the middle of town so we can't just *run out* for whatever whim-driven thing we need. No, now logistics and lists and travel routes and plans all come into play. When it's a 20 minute drive to anywhere you want to go, you don't just run out for a gallon of milk.

I'm doing a LOT of driving these days. We moved east by 10 miles from our old place, while we put our son in the best middle school in the county 20 miles in the other direction. So we live a 30 min drive from school. Funny thing is, if he rides the bus, we have to get up 30 minutes earlier (5:30) in order to make the bus on time (at it's last stop 20 minutes from home). But if we drive the whole way we can sleep in until 6 and still get out of the house by 6:30 and make it to school by 7 so he can have breakfast before first period.

I'd rather sleep that extra 1/2 hour and get a 1/2 hour of one-on-one parent/child time in the morning. Of course we spend it honing our improv routines. My son is quite the comedian. It's only gotten him in slight trouble so far. One kid wanted to kick his ass for pronouncing his name with an exaggerated English "hoity-toity" accent. The other kids loved it and asked for a repeat performance. Jack Gogan didn't think it was so funny when he pronounced his name "zjaaaahk go-gaaaaahn" however and we had to give our son the "he's more afraid of you than you are of him" and "if he was going to kick your ass he'd have done it and not talked about it" pep talks.

Anyhow.... I got side tracked. He's a real comedian and I'm proud of him. He makes me laugh on a daily basis.

The other day we got the mail from the PO Box. The one on top was a window envelope that had great big letters on it saying "BILL ENCLOSED". He grabbed the envelope and held it up near his mouth and said "Bill! If you can hear me, we're gonna get you out of there! Just hold on, Buddy! We called the fire department and they are bringing the Jaws of Letter Opener."

I said "hey! At least it's a window envelope so he can see out." To which he replied "I can see through the window that they have your mother in there too... see her name right there?"

So, anyhow, we love our morning drives. And because I do so much driving all the time, I'm away from the house (and computer) more.

And because I don't have any earth-shattering news to report about Fingolimod or my trial, I guess I've just not thought about it.

I'm so BLESSED to be at the point in my life that I've had MS for 10 years and yet I can forget about it. I have no constant reminders other than some stiffness in my legs in the morning (which could very easily be due to age as much as MS).

I think about those MSers who are less fortunate. Who are wheelchair bound or constantly struggling in some other way to deal with their MS on a daily basis and I am moved to thankful prayer. I have to thank God daily that I have a normal boring life again.

And with that normal, boring life I would like to make some kind of mark on the world with the gifts I have been given.

I want to either write children's books or get back into doing my artwork. I used to be quite good and to turn from that and give it up like it's something I got tired of is sort of like telling God I didn't care for that scarf he got me. IT'S A GIFT! I need to appreciate and use it... before it could be gone in a flash. One good relapse and my drawing/painting/sculpting skills could all be a memory.

So maybe I should start drawing again.. and maybe I'll share my creations here. It'll give me a reason to come back and post.

As far as my trial goes, I'm headed up Wednesday the 9th for another poking and prodding session to be rewarded by 3 more bottles of the magic potion.

I heard that Merck got a "refused to file" letter from the FDA in regard to their oral med, cladribine, so that's making it a closer race. The drug companies can fight all they want over who gets to claim their spot in history as the first to offer a pill for MS. The winners are going to be the thousands of MSers who get to benefit from their effects.

Maybe not everyone will be as fortunate as I have been... to have no more side effects from the pill than they get from a daily vitamin... but hopefully they will.

And -- knock wood -- I'm STILL relapse free since April 07. The LONGEST span of remission I've ever had since being diagnosed.

I'm lovin' it.

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