Hi, All,
Yeah, it's me, a sort of prodigal daughter. It's been probably six months since I've been a regular on this forum, even though I have this purple flower next to my name. I can hear the newbies, now..."who's this?", "never seen her, before", "wha...?". And those who know me..."well, it's about time she showed up!"
Yes, it is about time! I don't know how people do it with working, caring for a household, raising kids, playing with grandkids - my day starts at 5 am, and I get home from work usually about 6:30. I make dinner, do the washing up, go to bed, and, well, lather, rinse, repeat!
So, for those who don't know me, I was diagnosed in May of 2009, after some 25+ years of on and off symptoms. The ball really started to roll about two years before my diagnosis, and things have progressed, but to a relatively manageable degree. I'm on Tysabri, and have been for some 39 infusions, now, and I know it's helping, because when things get delayed because of an insurance snafu, my symptoms come roaring back. In fact they come roaring back about 5 days before my next infusion!
I'm all about living well with this MeSsy disease. That's not to say I'd ever say "I have MS, but MS doesn't have me". It DOES have me by the short hairs, and there isn't a single G-dd@mn day I don't have symptoms! But I've been a fun hog all my life, and a self professed adrenaline junkie, and I'm going to do my best to keep having fun! I had to give up surfing, but I still ride my road bike (I'm better on my bike than on my feet), I still whitewater raft and kayak, I still camp and fish, I still love stunt flying in friends' planes, and I still love rollercoasters - the steeper, faster, and loopier, the better!
Case in point: At the begining of this month, my sister and I took our annual river trip with her partner and my DH down the Rogue River in southern Oregon. We were self guiding, as we have been down the river a few times before. It was a four day trip, and our days consisted of paddling all day (mostly class II and III), hauling the stuff off the raft (DH and I paddled our inflatable kayak), cooking dinner, washing up, and finishing the day setting booby traps for bears. This meant stacking the dry boxes on top of the cooler, and putting the pots and pans and steel cups on top of it all to scare them off if they started picking around. Sleeping wasn't an issue - we were all exhausted. We slept under the most amazing stars every night. Day 3 was the craziest. Black Bar Rapid was a kick @ss class III, and DH and I were paddling strong! We did a textbook run, and we were so proud of ourselves! We ate lunch, and continued through to "Coffee Pot" - a deceptive class III-IV. It was a left lateral wave that flipped us over. We were official members of the Coffee Pot Swim Team! The reason the III-IV classification gets in there isn't because of the wave, it's because of the weird, boiling, bubbling, deep canyon water, and the little side eddys that will suk you in and spin you around a little! OK, back in the kayak just in time for "Blossom Bar" - a big class IV, that DH and I just deflate the IK (inflatable kayak), roll it up, and put it on somebody's raft. My sis was rowing the raft, and managed to dump-truck it on the "picket fence" (a group of nasty rocks to avoid), and DH, sis, and her DP swam that nasty rapid! DH dislocated his ring finger and had the presence of mind to reset it and pull his wedding band off before the swelling set in! Wow!! I got off completely free, because I hitched a ride on someone else's raft, and he made a perfect run of it. Then there was the rescuing of our raft, which is a whole different story. But stories will be told 'round campfires for generations to come!
Sis and I came to the conclusion we're only doing commercial trips anymore. That way, we can paddle all day, and sit on the beach with a cocktail while someone else does the cooking and washing up!
So my MO? Don't hold back, have a "Plan B" for when things go awry, pack your "tool kit" (mobility aids, Poise pads, etc.), and for heaven's sake, have fun! Oh, and back when I was taking Rebif, yes, I did my injections on multi-day river trips, then, too.
It's good to be back.
Love,
Lisa, aka Guitar_grrrl