Kicking LE's butt!! Exercise & Self Care Log

Wonderful ideas ladies.  Thank you!  Sue

Thank you Carol!

Kathy, thanks for that information--I could use a change of DVDs to follow, so I might get the new one myself.  I didn't know it existed.

Yesterday and today I got in lots of steps, but no cardio.  Today was great though, a trip to the zoo with my daughter and grandchildren, who are little enough to want to make all the animal noises and just be silly.  I did just under 12,000 steps today, and yesterday it was about 10,200, including multiple walks to a nearby grocery store as I ran errands to help prepare for my grandson's birthday party.  It's so much better when walking is not just for walking's sake, but part of a fun day when you can forget it's exercise!

for me at my gym, I talk to folks and it makes the time go faster. Many folks have ear buds to listen to music

what helps me is a weekly session with my trainer, only 30 minutes but I feel accountable to him

8 min arc trainer

6 min recumbent bike (increase)

3 min 30 sec on elliptical (baby increase)   Yes, I'm going really slowly,,,, by the time I'm up to a normal person's endurance,, it will be time for surgery.  oh well.  I just dont want to flare anything up.

i do really like the arc trainer thing.  I just need to get ear buds for listening to the TV's.

I had this crazy idea last night and I cannot let it go without asking for opinions here.  What if we had a patient-initiated and run LE compression and exercise weekend somewhere?  As in, get together, round up some friendly exercise trainers/instructors who are also schooled in LE, find a fitness facility willing to provide space and equipment, and have lots of sessions where we can learn about and try different forms of exercise, including adaptations for our fitness levels and our LE needs, and learn about precautions, etc.?  Also try to interest the various garment vendors to come and show their wares; and we all bring our drawersfull of compression garments for some show and tell and lots of chatter about what we've tried, what worked, didn't work, etc?  I don't suspect it would be cost free to do this--I'm thinking of a few true exercise experts who might donate their time, but travel costs would have to be covered, and the gym or fitness center might need to recover some costs.  And of course, we would have to pay to travel, stay, and eat. If we did this, would enough people be able to pay to travel to the event, plus say, $50 toward the event costs, to make it happen?  And where (what city) is the most accessible place, with low airfares and hotel prices?  I wonder if it's Las Vegas. I thought of this crazy idea in an email conversation with a friend late last night and really could not get to sleep for all the thinking about it.

Thoughts?  I know that air travel is spooky for lots of people with LE.  I do fine with it (in sleeve/gauntlet, of course), but I wonder if it's an impediment to organizing a gathering like this.  Who would travel to a Lymphedema Kick-Butt Weekend?

And THANK YOU for the encouragement!  The elliptical is harder, but feel like I should be doing that for my arm. But I do prefer the Arc Trainer. So that will give me motivation to keep going and improve my cardio before surgery.  One month and 2 days to go.  I gotta do kick some butt now!

Cardio 3 days in a row.  A new record!

Elliptical:  4 mins  (baby increase again)  why is this machine so hard for me?  I don't get it. It always has been. Even before BC.  I keep do it cuz it's the only cardio machine that moves the arms. Am I making sense?

Recum bike:  I swear this is mostly a slight cool down between machines.  6 mins.

Arc Trainer:  a whooping 10 mins today.  Woot!  It is a weight bearing exercise, like elliptical, but yet I enjoy it more and it's not as hard to go the distance. I just don't get why. On the Elliptical, my HR was at 146 after 1 min.  On the Arc Trainer, I stayed in a good exercise range.  Go figure.

Carol, what an amazing idea! Love the idea of inviting the garment folks to show up.

Orlando's not exactly central, and harder for our Canadian gals. But Vegas's off season is nasty hot. Still, even in-season it's relatively reasonable. 

How would we get the word out? And is this just about bc-related LE or is anyone with LE welcome? And how about the lipodema gals?

And where on earth are you going to come up with savvy trainers?!

Better go haul out the suitcases...
Binney

So, the first step is to use our collective intelligence and wisdom to identify a location that is thought to have relatively inexpensive flights and hotel accommodations.  So, where do the low-cost airlines fly?  

Binney, if on a weekend, I am optimistic that I could convince a few people to donate their trainer expertise, especially if we did exercise sessions all on one day, i.e. Saturday, and they could get home before the end of the weekend.  Travel expenses would need to be covered, but I just think there are some wonderful folks out there--such as an OT who is about to release a book featuring Pilates workouts for BC survivors, and another great person, a personal trainer who helped run the PAL Trial.  Wherever we might do this, there may be a lymphedema clinic or a hospital within range that offers Lebed programs, and whoever does that might donate time. As to whether to include others besides BE-related LE, certainly no philosophical objection, but I do think that the narrower the scope, the simpler and more likely successful a program that meets the needs of all the attendees.  First time to do something like this--keep it simple if possible. But that's sure something to think about.

This is such a huge, huge 'maybe' --but it will never happen if we don't imagine it first!

Hmmm, Cleveland. I have lots of peeps there that would make it convenient to spend time there investigating the possibilities.  

The book is just about to be released on Amazon:  http://www.amazon.com/Pilates-Breast-Cancer-Survi...

And they say Cleveland ROCKS! 

Wherever this dream event might take place, we need to find a not-for-profit organization willing to participate to the extent of being the funds collection and disbursement agent. I organized a small-scale workshop here in Michigan a few years ago, for trainers and LE therapists to learn the exercise program used in the PAL Trial, and finding a money manager was no small feat.  Local hospitals and a company donated money to help cover expenses, but they would not do so unless the recipient was a not-for-profit organization.  And that organization needed to be willing to take credit card payments from attendees.   Also, there's a chicken-egg challenge of sorts: sponsors/garment makers and presenters won't want to come unless they're sure there will be a good turnout, but most of us wouldn't commit in advance, let alone pay, until we're sure that there's a good program of presenters / exercise leaders and that there really would be enough of the different garment makers to have a chance to a lot of comparison-looking.

Whew, lots and lots of details to figure out! 

Binney, that's so smart! A few friends at the garment makers and dealers might be willing to help figure out some possible avenues here.  Juzo wants us all (sincerely) to 'get moving' so they might well take a request for help to heart.  I'll make some inquiries; if anyone else has well placed garment friends, PM me and we can coordinate efforts at some preliminary fact-finding along these lines.

glennie sounds good to me!

me, no gym today as I have 4 hunkie guys installing a new heating and cooling system!! not thinking I will make it to the gym today

so it is a day off for me