Aa
A Reintroduction
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
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
Thanks, folks, for the warm welcome back.
Alex - I still haven't seen the Indigo Girls live. Have a wonderful concert day!
Sarah - I thought you knew. The purple flowers next so some names indicate Co-Community Leader.
Newbies/lurkers - nice to meetcha!
Regulars - nice to be back! :-)
Alex - I still haven't seen the Indigo Girls live. Have a wonderful concert day!
Sarah - I thought you knew. The purple flowers next so some names indicate Co-Community Leader.
Newbies/lurkers - nice to meetcha!
Regulars - nice to be back! :-)
hey, grrrrrrl! It is good to have you off the river and back onto our grid. I'm with you about that daily routine -I would really like to ditch the day job and have the time to do everything I want instead of what they need.
Your recent trip is quite the adventure - thanks for sharing the laughs and big attitude. You're the best and we have missed you.
hugs,L
Your recent trip is quite the adventure - thanks for sharing the laughs and big attitude. You're the best and we have missed you.
hugs,L
Hey all recently diagnosied..
Love reading all the positivity on here..
My outlook on life is pretty much what you guys have been saying..
Don't let the MS effect you (the best you can that is) and live life to the most. i want to carry on life the as much as i had been but i know what my limits are and i do listern to my body when it tells me to slow down..
But don't give up.. it's only a slight hick up in our lives. there is always a soloutiion..
Positive mental thinking (PMT) that's what it's all about..
Happy living life to the max every one.. xx
Kerry
Love reading all the positivity on here..
My outlook on life is pretty much what you guys have been saying..
Don't let the MS effect you (the best you can that is) and live life to the most. i want to carry on life the as much as i had been but i know what my limits are and i do listern to my body when it tells me to slow down..
But don't give up.. it's only a slight hick up in our lives. there is always a soloutiion..
Positive mental thinking (PMT) that's what it's all about..
Happy living life to the max every one.. xx
Kerry
Heh girlfriend, so very glad to have you back.
We have missed you alot, .....
((HUGS))
Candy
We have missed you alot, .....
((HUGS))
Candy
Hi There! I'm one of the newbies you are referring too. If you are bored one day, here was my introduction a few weeks ago.
http://www.medhelp.org/posts/Multiple-Sclerosis/Greetings-from-a-newly-diagnosed-32yo-F/show/1951840
Hope you are doing well, love your outlook on life! Take care of yourself and it's nice to meet you!
Regards,
Cubbiesfan
http://www.medhelp.org/posts/Multiple-Sclerosis/Greetings-from-a-newly-diagnosed-32yo-F/show/1951840
Hope you are doing well, love your outlook on life! Take care of yourself and it's nice to meet you!
Regards,
Cubbiesfan
Great to see you! Okay, that may seem odd as I wasn't a member six months ago, but seeing as I 'lurked' for over two years before making it official, I certainly recognise you!
Sounds like my kind of trip. I adored rafting growing up (Ocoee, Nantahala, Hiawassee). I do miss it here. But I've just taken up other pursuits in its place!
Love that fourth paragraph. You rock.
Sounds like my kind of trip. I adored rafting growing up (Ocoee, Nantahala, Hiawassee). I do miss it here. But I've just taken up other pursuits in its place!
Love that fourth paragraph. You rock.
Oooh Indigo Girls! My friend and her parents got to go see them when the came here to the Frederick Meijer Gardens. She said they were incredible!
I'm with you have fun. What a crazy trip you had.
I am planning a camping trip to the Outer Banks of NC for the first week of July right after I see Indigo Girls in concert.
Life is good.
Alex
I am planning a camping trip to the Outer Banks of NC for the first week of July right after I see Indigo Girls in concert.
Life is good.
Alex
While I may no have quite your level of adrenalin seeking, I am a big believer in respect MS but not letting it shut you down. I have my everyday MS reminders, but thankfully they don't limit my functionality, unless you count being happier if I know where the nearest bathroom is as limiting functionality :-)
Like you I am better on a bike than on my feet. I have about a 45 minute limit on my feet, but on a bike I can go for hours. So I just bought a new bike!
Having this M(isberable) S(h*t) *****, lets be clear about that. But I have it. So, as I asked my doc when he told me I had it, "What do we do about it?"
Kyle
Like you I am better on a bike than on my feet. I have about a 45 minute limit on my feet, but on a bike I can go for hours. So I just bought a new bike!
Having this M(isberable) S(h*t) *****, lets be clear about that. But I have it. So, as I asked my doc when he told me I had it, "What do we do about it?"
Kyle
I am so glad to see your bubbly self back here! Hugs to you!
I'm glad you're living life to its fullest and you have such a great attitude its infectious!
Welcome back and see you around! By the way, love your name....LOL
Lisa
I'm glad you're living life to its fullest and you have such a great attitude its infectious!
Welcome back and see you around! By the way, love your name....LOL
Lisa
Thanks for this! My goals are to get my left side strong enough to play guitar again and play hockey again.
Amy
Amy
I love it! I respect that we are all at different stages in the disease but I love your message to go out and make the most of life - live life to the max. Bravo.
I too have been an infrequent visitor to Medhelp but it doesn't matter how long we're away it is great to feel part of the caring community.
It's about what we can do isn't it, not what we can't. Yes, you still have to inject and take a 'tool kit' but that's just a couple of words in the story.
I am going to visit my male MS friend next weekend to have some fun. He is in a fully electric wheelchair at only 48 years and lives in assisted accommodation for profoundly disabled men. His favourite thing to do prior to getting MS 15 years ago was hanging out with the boys and playing cards. Sadly, he hasn't done this since. So, I'm bringing a bottle of his favourite scotch, a pack of playing cards and betting chips and we're going to have a grand old time together with the lovely female carers. I might even let him win a few hands of blackjack!
Life is about attitude - what you can do, not what you can't - and I love yours LIsa.
Blessings
Alex
I too have been an infrequent visitor to Medhelp but it doesn't matter how long we're away it is great to feel part of the caring community.
It's about what we can do isn't it, not what we can't. Yes, you still have to inject and take a 'tool kit' but that's just a couple of words in the story.
I am going to visit my male MS friend next weekend to have some fun. He is in a fully electric wheelchair at only 48 years and lives in assisted accommodation for profoundly disabled men. His favourite thing to do prior to getting MS 15 years ago was hanging out with the boys and playing cards. Sadly, he hasn't done this since. So, I'm bringing a bottle of his favourite scotch, a pack of playing cards and betting chips and we're going to have a grand old time together with the lovely female carers. I might even let him win a few hands of blackjack!
Life is about attitude - what you can do, not what you can't - and I love yours LIsa.
Blessings
Alex
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