Kicking LEs butt!! Exercise & Self Care Log

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  • Dejaboo
    Dejaboo Member Posts: 761
    edited May 2012

    Thank you for the Links Kira.

     Should I be asking my questions on another...Since this is more of a Exercise thread?

    There are 2 Listed that are not to far from me.   My dh was seeing a PT today for his Shoulder & he asked her about LE therapists.  She mentioned the 2 that I just looked up.  She also said they all had to add in STAR certification (?) this April.  What does That stand for?  (the one I saw 4 years ago was also listed)

    Nice Story about your Rescues.  My dd has an Austrailian mix...We are still trying to figure out what the Mix is.

    Deja was a Flat Coated Retriever.

  • kira
    kira Member Posts: 659
    edited May 2012

    Dejaboo, I think it's fine to ask your questions on this thread--I always worry that people get overlooked, but that's not happening.

    STAR certification (TM) was created by Julie Silver MD, a Harvard based rehab doctor who had breast cancer about a decade ago, in her ?30's, and she wrote a couple of books about it, essentially stopped doing clinical medicine, works at Harvard as a book editor and sells her on-line oncology rehab course.

    I actually had the opportunity to take the course, through a grant, and I found it interesting, and it will hopefully raise awareness about the long term needs of survivors. Although LE was mentioned frequently, the module on LE had a fair number of mistakes in it.

    So, I'm STAR certified, for what it's worth. The grant I was on is to encourage members of a breast health center to all become STAR certified, it's written for all levels of health care providers--OT/PT/MD/RN.

    She markets it as Oncology Rehab 

    http://www.oncrehab.com/

    It sounds like you have a lot of potential therapists to chose from--and the STAR program does make PT's who aren't trained in LE aware of it and the issues that cancer survivors face.

    Our dogs are so important, and looking at Deja's kind face, I imagine you miss her a lot. I drove home with my aussie mix, and called my dh to google australian shepherds and he called back and said "high energy, can be nervous". Yep. So smart.

    Kira

  • kicks
    kicks Member Posts: 319
    edited May 2012

    kira-



    Apps Rule! Got my first App in '72 (Saddlebreds and TB's before that). I'm still deciding rather I want to just keep 'pleasure' riding or get back to being serious about working on the flat. My OF days are over at my age (well I'd still pop a fence sometimes - it's in the blood.)



    I'm so sorry you lost yours. I lost Kicks a bit over a year before DX but I still had the others to help me through that time (with Hubby and Son help).

  • kira
    kira Member Posts: 659
    edited May 2012

    Kicks, it's interesting how many of us use beloved pets as our screen name.

    I lost Gabe, our appy, a few months before my diagnosis. I still miss the big guy, he was the perfect family horse--got him for my older daughter, he was a great jumper until he blew his suspensory ligament (and I swear, his wind puff was LE...), and then tried his hardest to do dressage, and finally she primarily just rode him bareback or on trails. The last 5 years of his life, she was at college, then working an hour away, so he was really my responsibilty. Everyone in our family rode him, and he was stabled with these high end dressage horses, and he was the sanest horse in the barn.

    Our former barn owner dropped off a truck load of loam for me, and we talked about how much we all miss him.

    Keep on popping ove the occasional fence! Sounds great.

  • hugz4u
    hugz4u Member Posts: 1,818
    edited May 2012

    Kira, I looked up the sites you gave me. Thanks. Gonna try to exercise on Sunday and maybe try the ITB exercise that was on that site. Gotta be so careful to not screw it up though.  Can't exercise much anyway cause Carol sent me her Cyber cold! Just resting up. So glad you could meet Carol. Cool.

    Isn't it interesting how the word "dogs" can lite us up? Horses to! Hubby was walking and saw a mini labradoodle ,23lbs and hinted to me. There is a place that sells the mini's for 1500 here. I heard that was a good price. Yikes! I really want the goldendoodle though. They are so obedient and willing to please. Either way if the dog fairy dropped one off. I would be thrilled.

    Becky, Yah. Bromelain is good especially with Curcumin for inflamation. It absorbs better together.  I heard it was good for LE to. 

    So you girls are liking that new app toy. Anything to keep us moving.

    GO KICK LE ASAP.  Everyone take at least 3 deep breaths right now!...There now you have done yourself a favour!

  • Momine
    Momine Member Posts: 2,845
    edited May 2012

    Kicks, not OT, considering that the dogs are exercise buds for many of us. Besides, when you have dogs, it is like having kids, any chance to talk about them is a good chance ;)

    Our gordon was abandoned and roaming the streets. I have a feeling the original owner got an adorable puppy, and then didn't know what to do when it grew into a very large and energetic dog. We do not have a yard and nor do we have anywhere to walk him off leash, so walking him is a serious challenge. He absolutely adores my dh, frequently sleeping next to him with his paw on dh's chest, or if awake, trying to climb in dh's lap. 

  • Nitocris
    Nitocris Member Posts: 56
    edited May 2012

    Kinesio tape worked so well to support the knee yesterday, that I kept it on this morning and did a Dance DVD.  30mn of Jive, swing and charleston + 15mn of LE remedial exercises with a yard stick.  

     Carol, Becky, with all that walking, you deserve medals.  The only people who could beat you are Michael Flatley and the dancers of Riverdance.  "Feet on fire", you don't even want to count the steps! With a sleeve or bandages, no problem.... it's all about legs.   Enjoy.

     http://www.youtube.com/watch?v=W22gpBv00gg&feature=related 

     As we all love animals, how about these cute penguins in their own version of Riverdance. (from Happy Feet 2)

     http://www.youtube.com/watch?v=WSYdOidSqjU&feature=related 

    Good week-end to all

  • BeckySharp
    BeckySharp Member Posts: 465
    edited May 2012

    Oh Nitrocris---Riverdance!  Come on!! I am nowhere near that nor wil ever be.  I would fall and break my nose. 

    Carol--I downloaded an app yesterday called pedometer.  It seems to count steps on the elliptical more accurately.

    Dejaboo--Welcome. 

    I am leaving tomorrow for a trip to Philadelphia so yesterday I did only 30 min on elliptical.  I also cleaned house (in case I don't return no one would say my house is messy!) and started packing.  So I did not have any recliner time. 

    Today I am going to do the elliptical every half hour as I finish packing and then an hour on the treadmill plus weights.  I will be in the car tomorrow for a long haul and will only get walking in at rest areas.  My sister in Philly has a treadmill so maybe I can get some time in on it when we arrive or get my sisters to go for a walk with me.

    You all are making me want a dog more and more.  I stopped by my office yesterday and my boss had the cutest little kitten in her arms.  A student had found it in the middle of the road the day before and brought it to class.  She was going to take it to the shelter but my boss decided to adopt it instead.  It was so tiny.  Why do people abandon animals?

    Have a good day everyone.  Get over those colds!

  • KS1
    KS1 Member Posts: 161
    edited May 2012

    Kleenex & hot chocolate for all who are sick (and disposable plates/silverware to Binney).  

    My axilla and side were = still sore this AM, so instead of heading off for my 6 mile circuit, I spent an hour or so trying to gerry rig some kind of method of compressing the swollen area.  The most successful was just tucking under my armpit a 9" x 9" x 12 triangular piece of tic-tac solaris swell spot that I had left over from a previous LE arts & crafts project.  did a couple of 1 mile circuits ... so far don't feel any worse for the wear.

    Walking with the tribute + wrapped hand has been working well, but it was a bit warmer when I walked today (low 70s vs. low 60s), and the tribute was hot.  If I am going to do this in the summer, I have to come up with a solution to the heat problem.  If I take the finger spacers out of my second (newer) tribute, then I could wear one at night and have the other in the frig (or is it freezer?) overnight.  My second tribute is a lot snugger so it's possible I won't be able to wrap underneath it, and if I take the finger spacers out and can't wrap my fingers, it will be useless.  What do you think?  Should I go for it?  KS1

  • Galsal
    Galsal Member Posts: 754
    edited May 2012

    Kinesio taped again this past Wednesday.  Sadly, I am allergic to the adhesive after all.  Removed the tape at 6am yesterday and still have red welts that itch areas.  Not the entire area taped, just some.  Took a photo of it to show them and put that in the record so I don't have that put on me again. 

    Aloe with lidocaine helps the itching.

  • kira
    kira Member Posts: 659
    edited May 2012

    KS1, I personally would be leary of "trashing" a new Tribute, unless it's going to let you do what you need to do. Have you seen the adds for the daytime jovi combi, slim line with the glove under it? It's cut to allow a glove or wrap. Wonder if Solaris would modify one for your particular needs.

    Check this out: I went to get you a link, and the off the shelf jovi sleeve from lymphademaproducts came up, and they state the compression of the jovipak sleeve--around 12-14mm and adds 7mm with an over sleeve:

    http://www.lymphedemaproducts.com/products/jovipak-upper-extremity.html?ppc_ref=gw2&gclid=CLTz-MaknrACFUEGRQodPjybYg

    Here's the youTube on the combi--no mention of the amount of compression, it's not recommended for night time, and the jacket is sewn into the arm sleeve

    http://www.youtube.com/watch?v=vvPFng0kXzg

    You know I've been bugging Solaris about addressing hand swelling, and so far, I haven't gotten anywhere new, but they've been pleasant about it.

    I do know they would want to out do their competition....So, let's keep trying.

    I checked on lymphademaproducts and they say they compression of the Solaris=N/A--yet it always gets to me that the sewing of the caresia glove is far better than the finger to axilla one piece. Go figure.

    Kira--no wonder the open fingered jovipak glove didn't compress my fingers.....Nice sewing, poor results

  • Tina337
    Tina337 Member Posts: 516
    edited May 2012
    I have started and deleted half completed posts for the past few days. Completed one and thought I posted the other night, but I must have previewed and logged out. Phooey, obviously too tired. Have quickly read through posts, so much going on with the Kick Butt ladies. Hope injuries, swelling and colds resolve quickly.




    Deja, so glad you popped in, as you will get the best suggestions from these gals.




    I have been preoccupied with issues re my mom. Will fill you all in once I get a chance to relax after boarding train tomorrow. Returning in a month or so to check on her. My head hurts from a gazillion details.




    Last night I got to do something relaxing, which was drive a little north of Tampa to visit an old friend. I was recalling meeting a friend from the Recon forum a couple years ago, when I suddenly realized that Galsal is in the Tampa area. Galsal, next time I am here maybe you'd like to get together.




    Hey, we should call ourselves the Sisterhood of the Travelling Compression Garments!




    The day before yesterday I got another 11,000 steps in, 6,000 done in one bulk. This time I walked in the condo parking/common area, down to the pool, back to our unit. I saved the jumping jacks and boxing moves for inside, lest the other residents think all Philly folks run around doing boxing moves a la Rocky Balboa!
  • theBCavenger
    theBCavenger Member Posts: 172
    edited May 2012

    Hey All - Took dog on 3.67 mile walk today. Going a little further every day :)

    Still loving the Nike app - went in and set goals! Just wish it had a section for walking only, as I don't know if I will ever be able to run again... :(

    Hope you all are having a great day! 

  • ohio4me
    ohio4me Member Posts: 323
    edited May 2012

    Saw my family doctor at a fundraising event and told him I am going to educate in him LE. He is interested in knowing more. He is president of the state chapter of family practice physicians next year and is interested in having someone speak on LE at a monthly meeting. Yeah! It's a step in the right direction.

    Also forwarded the link to Speak Up Speak Out on Essential Information for Health Care Providers, thank you Kira.

    He said he wants to learn more - I'm gonna take him up on it.

  • kira
    kira Member Posts: 659
    edited May 2012

    Ohio4me, there is a BMJ self study manual--Carol sent me the link--they were thrilled in Canada, because 1500 doctors had done it--I'd be ticked off that there weren't more.

    Here's the link, he just has to register for the site, it's free

    http://learning.bmj.com/learning/module-intro/.html?moduleId=10029385&searchTerm=%E2%80%9Clymphoedema%E2%80%9D&page=0

    Working through the AAFP is great!

    You rock.

    Kira

  • BeckySharp
    BeckySharp Member Posts: 465
    edited May 2012

    Hello all---Quiet on this site.

    I was supposed to be in Philadelphia as of yesterday  visiting a sister but we cancelled the trip as the sister who was going up with my Mom and I did not feel well.  Plus since it is quite hot we were worried about my Mom being able to tolerate the heat sightseeing.  I don't do well in heat either.  So we postponed.  I am disappointed as Tina and I were going to meet but we will eventually.

    I did not do any cardio yesterday.  I went out to the dam at 7:00 this morning but only did 5 miles as the heat was wiping me out.  According to the Nike app I was going slower each half mile.  I was drenched.  I am going to do the weights now and go to a movie.

  • Tina337
    Tina337 Member Posts: 516
    edited May 2012

    Need to catch up on this and other LE threads. Will do tomorrow, so pooped on ride home, and it arrived an hour late. The train was my favorite part of the trip, gave me time to relax and take my mind off things. My pedometer must be so confused, as I had days with over 11,000 steps, and the last couple were so low. When we got in my friend's car at the station tonight, I looked at my pedometer and burst out laughing because it was a ridiculous number: 697 steps all day. Kind of hard to get those steps in on the train. Tomorrow I will be on target. I have really noticed that cardio, or just not sitting around as much, makes a big difference in swelling.

  • carol57
    carol57 Member Posts: 1,550
    edited May 2012

    Tina, Welcome back to your normal routine -- we'll look forward to seeing your frequent posts again!  Relaxation counts for a lot, so don't regret your train time.  Have fun getting back into your fitness routine!

    Carol

  • Tina337
    Tina337 Member Posts: 516
    edited May 2012

    Thanks, Carol. It is a relief to be home, but it was hard to say goodbye. I will go back in a month because my mother will need to give up her room in assisted living and become permanent resident of health center. Will need to see what gets moved where.




    We elected to go the no feeding tube route, despite some pressure to do it. Interesting to see how both clinical and personal views played a role in push for tube. Primary reason we decided against was mom said she didn't want it, her advanced directive said no extraordinary measures, and I didn't want her to have it unless she wanted it. I wasn't keen on the tube anyway. Bottom line was it wouldn't work without her cooperation, and I wasn't going to force her. My mother has always enjoyed eating, and I wasn't going to take away the last thing she has that gives her both pleasure and structure to the day. It's been hard enough to get her to cooperate with getting out of bed, doing PT, letting them change her diaper. She was independent with all of these things before hip fracture. She definitely is also declining mentally and seems more confused, less like herself. She is one angry bird and not winning any friends among staff, unfortunately. Her feistiness has always been something that kept her going, but it was mostly in check except for arguing over showers. Now it seems there's not much of a filter. I told her to be nice to staff, listen and follow their instructions. She pretty much agreed so I would shut up, although she did seem to be concerned when I described the kind of skin breakdown and sores she could get from not changing diaper or staying in bed too long.




    I had some very nice visits and talks with her about friends, family, other random stuff, but after being there a week, she got grouchy with me. Well, not really grouchy, but tired of talking and visiting. I needed a break, too, so I don't blame her. The day we left, she was raising holy hell, and when I came to say goodbye, there were three aides in her room to change her diaper, the bed, and get her into wheelchair. We went out into hall and talked a bit, and I gave her one final reminder about behaving and being careful with feeding herself. When I had said my peace, I told her I was done being bossy because I know she is going to do what she wants. I also said I wasn't going to worry anymore (which I had been saying during my visit). She said "thank you" (like she was thinking, thank goodness). This made my husband laugh, and I told her that it takes a lot to make my husband laugh, so she should be pleased with herself. She smiled and acknowledged.




    We sat quietly, some awkward gaps of no conversation, and I finally said it was probably time for me to be on my way. Well, her whole face lit up with a big smile, and she said that was great. I asked if she was going to head back down the hall, and said, no, she would wheel herself with us to the door. LOL! Talk about glad to see me go!! I just laughed and told my mom she was a piece of work, and she continued to smile. My mom, my husband, and I realized just how funny this was. We said we loved each other and goodbye. I have to tell you, if that was the last time I saw my mother alive, I will be so okay with it. That is my mother in a nutshell!!

  • carol57
    carol57 Member Posts: 1,550
    edited May 2012

    Tina,  Now I'm extra glad you had the enforced down time of that train ride home.  I imagine that many elderly people lose their kindness instincts when in pain, under stress, and feeling humiliated by the very personal care that's needed from strangers.  How hard for everyone--you, your husband, the care staff and of course, your mother. Keep us posted on how she does.

    Carol

  • carol57
    carol57 Member Posts: 1,550
    edited May 2012

    It has been a few days since I posted serious exercise, and even today's activity is a bit underwhelming. Today I finally feel more human after days of a cold, which feels like it has turned the corner.  I caught up on a lot of work and life's little errands, and by about 9 pm I realized I'd not made any effort to get in some activity.  Popped in a Leslie Sansone DVD, only to find that for whatever reason, the DVD player is not working. That will be tomorrow's problem solving.

    So, I went outside and did laps around my house, which is actually a pretty serious effort, because the house is built into a high bluff, so there are steps on each side, and some serious steps to continue down the bluff to the water below.  I did this for 30 minutes, down the steps to the water, return trip up, around the house and back down the other side, down to the water, etc. I have no clue how many stairs I climbed in all, but enough to get me breathing hard for the half hour, and tomorrow I return to my gym routine so will work longer and harder.

    The miracle of the evening is that we don't have mosquitos yet.  Shhh...don't tell them I said that, or they'll come looking for me!  Not sure how much longer I'll get away with 9 pm walks, since the house is 100% in the woods!

    Carol

  • theBCavenger
    theBCavenger Member Posts: 172
    edited May 2012

    Tina - sounds like a great visit with your mom :)

  • Tina337
    Tina337 Member Posts: 516
    edited May 2012
    Thanks, DM, I am glad things went as well as they did. You really have to see the humor in some of this or it becomes too much.




    Carol, I hope you have turned the corner and are feeling better. Sounds like you got quite a workout in walking around your house and property today. It must be lovely.




    I definitely need to get moving, as I can tell my arm is not happy from sitting the last three days!! Yes, even walking in circles is better than being stationary - I can attest to that. I will admit I was not totally compliant during the last few days in FL and train ride home. I wore tank and glove, but I couldn't take the sleeve because of the heat. I did wear night vest though. Okay, for full disclosure, I will admit I only wore glove and tank during all the walking and jogging I did in FL. Fairly regular with MLD and trunk, occasionally with arm. Getting back on the compression sleeve wagon, promise.




    How is everyone else doing? It's been quiet lately. I know a couple of us have been having flares or issues, and I hope you gals will check in and let us know how you are managing. It can be hard emotionally when you're in need of extra self care, especially when it temporarily sidelines you. Hugs and chocolate to all!
  • BeckySharp
    BeckySharp Member Posts: 465
    edited May 2012

    Hi--6:30 am here and I am meeting my friend at the dam at 7:00.  We are trying to beat the heat.  I love walking in the am.  I will do weights when I get home.

    Tina--I feel like I know your Mom.  It is so hard to watch them decline.  Her fiestiness (sp?) is all she has left.  I hope the caretakers understand that.

    Carol--Hope you feel better soon.

    Have a good day everyone!  Wonder what hugz is up to?

  • Tina337
    Tina337 Member Posts: 516
    edited May 2012

    Becky, way to go with the walking and weights. How wonderful you are on such an early schedule. During peri menopause, my ability to fall/stay asleep fell apart and I never have quite got myself synced back to that early morning routine, which is a beautiful time to start the day. And that is especially true for outdoor exercise during summer. I really need to get myself in bed earlier and refrain from jumping on computer in middle of the night when I wake up. I hate tossing and turning, so I immediately pop open iPad, which is actually more stimulating. I wonder about Hugz, too. Just not the same without our #1 cheerleader. I will have to start doing the stairs again if she doesn't show up soon!!

  • carol57
    carol57 Member Posts: 1,550
    edited May 2012

    Becky, it sounds like you were headed for a glorious day when you started out this morning. I hope it met expectation!

    Tina, sleep is so mission-critical.  Sounds like you need a plan to get more of it.  When I read your post, at first I thought well, when I wake up in the middle of the night, because I'm not able to put work projects out of mind before I nod off, I want to jump on my computer, too--only not in the way you meant!

    Hugz..I'll add my voice to the 'where are you' chorus.  I hope you're busy gardening or doing some other fun activity, and not having to hunker down to nurse your cold.

    Today I got my fitness routine back!  After three weeks of nonstop work travel, I was able to return to the gym and re-start my weight lifting. I backed the upper-body weights back by 20-25%, following the PAL precautions, and it felt simply great. I felt strong enough to lift heavier weights, but better to be safe than sorry, and even with the lighter weights I was able to wear my muscles out enough to get that tired-but-relaxed feeling.  I also did a 40 minute Leslie Sansone DVD, and that's a first for a while too, because after nipple recon about a month ago, followed a week later with a small breast revision, I was avoiding all bouncy, jouncy cardio and pretty much stuck to just walking. So, I raised my arms and did knee lifts and leg lifts to my heart's content without worrying about any fragile body parts being jiggled. All in all, a very successful day for me.

    Carol

  • ohio4me
    ohio4me Member Posts: 323
    edited May 2012

    Okay so the truth is I have never been friends with exercise. I am still not friends with LE because it has forced changes I never asked for nor wanted.

    That said (feels good just to say it) I have conquered the MLD as a routine. Lebed is still hit or miss with a goal of being more frequent. Working on the wrapping - don't like it but like the results. Since I have all the tools I need to treat/control LE I need to be 1) be more committed to the treatments and, 2) get started on exercise.

    I'm going to NYC with my sisters tomorrow. We are celebrating my sisters graduation with her BSN and our successful completion of this past year. They were with me at every appointment, treatment and were my in-home nurses. We have lots to celebrate. And...I am taking my pedometer and going to start recording my steps. Walking is a bit painful with arthritis and AI joint pain but I'm counting on Ibuprofen to help. I know exercise is the next horizon and the committment of everyone in this thread is encouraging so I'm going to get started. Starbucks are frequent in NYC so those will be our rest stops.

    Looking forward to a wonderful three days with my two wonderful sisters. I am truly blessed. Now I need to get moving!

  • carol57
    carol57 Member Posts: 1,550
    edited May 2012

    Bravo, Ohio4me, for such great resolve!  I heard an interesting radio interview with an author who researched the topic of habit.  He said that the best opportunity to change or establish a habit is while on vacation, i.e. away from home and normal routine.  It's very promising that you will be doing more than your usual amount of walking while enjoying fabulous city scenery and the company of your wonderful sisters. Tracking the steps under such optimal exercise conditions will tell you what you're able to do, given time and stress-free motivation.  Once home, perhaps you can use that kick-start as inspiration--aim for some number of steps you walked in a NYC hour or day.

    Have a wonderful time! I hope you do lots of fun activities, and lets send some brownies to whoever it was that invented ibuprophen!!!

    Carol

  • BeckySharp
    BeckySharp Member Posts: 465
    edited May 2012

    Yesterday was a glorious day but when my friend and I arrived at the dam early yesterday it was so foggy we could not see the dam or lake.  Even though the temp is lower in am the humidity is higher.  So I think I get just as hot as when I go in the pm when it is in the high 80s, low 90s with lower humidity.  She did 5 miles with me and I finished the last 2 1/2 alone.  Again I was totally drenched. I also completed 15 min on elliptical by doing a minute every 30 minutes.  It has made my legs so much stronger and I feel like I am bounding up the steps at the dam.  My friend cannot believe how much faster I have become and without gasping at top. 

    I am getting ready to do an hour on the treadmill since I have to meet my sister for an errand mid morning.   

    ohio--have a great time with your sisters.  I have 3 and they are my best friends.  Heaven help NYC if we all went there together!  Congrats to your sister. 

    Carol--Hope you have a good fitness day but do take it slow getting back into it.

  • carol57
    carol57 Member Posts: 1,550
    edited May 2012

    Rainy day today, which is a shame, because I had planned to walk to the bank--7.5 miles round trip.  I guess I'm a wimp.  Did not want to walk holding an umbrella, nor in a hooded raincoat with water dripping down my nose!  So, elliptical for 35 minutes, with some high-resistance intervals, and then 25 minutes of stairclimbing and walking in the house.  Twenty three flights in all!  Now for some stretches, and I will plan lots of time for extra long MLD tonight.  My arm feels a bit better this evening, maybe because I was away from my keyboard for a few hours.

    Hugz, you are still missing in exercise action!  I hope you are away because you're busy having fun!

    Carol