Kicking LEs butt!! Exercise & Self Care Log
Comments
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Tina, excellent point about pre-planning with hosts or fellow travelers. That's a really solid idea, heads off "surprises" and gives them a chance to enter in if they choose. Thanks for that!
Binney0 -
Oh, by the way, I'm still "corking," and I like it way better than using a timer. Sometimes I use the cork-bowl point to do a few other exercises (kinda like a par course), and that's added a nice variety to the otherwise boring routine. Another diversion is that our big dog has decided my treks back and forth from one end of the house to the other is a great opportunity to dash around waving his small blanket at me in hopes I'll play tug with him (which you don't do with service dogs, but he keeps hoping!
). So I have been grabbing one end of it and hauling him with me one direction, letting him run back the other way. Good exercise for him as well!
Binney0 -
Ok cool Carol. Get all the information you can, please.
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Today I got out of bed plenty early and got 7,000 steps in before breakfast, and then this evening, Becky and I did some exploring and found we could walk literally miles into the convention center connected to the hotel. Tally today: 14,301 steps, including 20 flights of stairs. A good day that I also started with some MLD just after the a.m. walk. More MLD momentarily before I give it up for the day and get some sleep. I learned so much today--including seeing Tina's hero Bob Weiss explain how it's possible (with some incredible persistence) to get garments covered by Medicare. All that learning has indeed worn me out, but in the happiest kind of way.
Carol
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Possibility of getting garments covered by Medicare is good news! Thanks for sharing! Bob Weiss may be best friend to all of us.
Dawn0 -
He described a long, patience-testing process of appeals, where you pay for the garment and have the garment supplier submit for reimbursement, assigning any reimbursement proceeds to the patient (who paid for the garment, of course). Of course Medicare denies it, but in the appeals process, which goes four or five levels and can take several years, you make the case that the garment is a prosthetic device, replacing all or part of the function of a permanently inoperable or malfunctioning internal body organ (lymphatic system).
Unfortunately, one has to go through this process with every garment purchase, and he is aware of patients who have had four or more appeals going at one time. The appeals can be combined if there are several reaching the final appeal level at the same time. He showed a pretty good batting average of convincing the fourth-level appeal judge that garments are indeed reimbursable prosthethic devices. The fifth level of appeal is outside the Medicare review system, i.e. in a court of law. Mr. Weiss explained that the first four levels of appeal have no cost to them--it's a matter of filing papers and knowing how to fill them in appropriately, and paying for postage. But the fifth level is very expensive and the cost to appeal there would be greater than the value of the claim.
Bob Weiss is indeed a good friend to the lymphedema community, and he encourages everyone to go the appeal route, so precedent can be established and a large number of cases can draw attention to the problem.
Carol
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I just sent Bob Weiss a new medicare policy that caps PT at $1800/year. He's on it.
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In fact, if any of you would be willing to appeal for Medicare coverage, PLEASE DO--and please go through Bob to do it, not only because he can help you get all the right papers and wording, but especially so he can keep track of the appeals won in order to begin claiming precedent. THAT'S how we're going to get Medicare to pay out for garments, but it'll take an accumulation of appeals won. Bob has been doing this for several years, and the more appeals he wins the closer we come to getting Medicare to pay for garments outright.
Sometimes, I know, it's easier just to pay out for the garments and not go the appeal route, but PLEASE consider how going through the appeal can affect other women down the line by making it possible for all of us to get our garments paid for through Medicare. If you've got the time and vision to appeal, it would be a huge contribution to LE advocacy!
(Just as a side note, Bob will help with any LE-related insurance appeal--it doesn't have to be Medicare.
) Here's how to reach him:LymphActivist (at) aol (dot) com
Thanks! Together we can make a difference!
Binney0 -
If one needs a garment asap and pays out of pocket, they might as well have Bob working to get reimbursement, even if it's a lengthy process. Those years are going to pass anyway, and if you get reimbursement, so much the better. But doing nothing will never change anything. You'll have paid for the garment and that's that. And by having Bob take on the case, you are helping those that come after you with the same needs. It's a way of advocating for your sisters of swell.
The application Bob made on my behalf for a second level insurance appeal was so well written and had all kinds of supporting documentation. And, he uses the prosthetic device strategy for insurance appeals as well. We are so lucky that Bob is willing to do this, and we should take advantage. It's free, but as a thank you you can always donate to the NLN and their work for legislative change regarding LE coverage. It can be stressful to appeal insurance or Medicare on your own, but Bob's involvement helps relieve that. If anyone has a chance of winning, it's him, so you can feel you've done all you can to get your garment covered. And you do deserve that coverage.0 -
This morning I did 3.5 miles on the treadmill. Gosh, I find that dreadfully dull compared to walking outside. However, it was rainy and steamy hot, so it was my only option today. I have plenty of steps at this point, but we're going to the movies later, so probably not much more.
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Carol! 7000 steps before breakfast? Wow. I consider it a major victory if I get 7000 steps a day. What a slacker I am.
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Today at the NLN conference, there was a lunch session where various researchers and others received awards and recognition. Someone talked about the lymphedema treatment act we're hoping can get through Congress, and in her remarks, she mentioned Bob Weiss. The effect was immediate--applause throughout that room! The speaker didn't have to elaborate on Bob's contributions...the room just 'knew.' I feel incredibly privileged to have met Bob in person. Gentleman and advocate just scratch the surface of the wonderful adjectives we could put after his name.
Cindyl, I'm getting slap-happy from the crazy early wake-ups that enable me to get steps in before I start the day sitting on my posterior during all the conference presentations this week. Picture me sleep deprived, but happy! This morning Becky and I both headed to the hotel's fitness room at 5 a.m., where she used an elliptical and I did a few miles on a treadmill. Then I went up and then down 7 floors, walking one floor, taking stairs up the the next and running that floor's hallway, then up to the next floor and walking it, then up one and running it...then reverse to cover the 7 floors again. So now you know I really am senseless! At home I work the steps in, but in a much more sane fashion over the full day. Today's step count is 11,607. And I'll sleep well tonight! (Becky says she's too tired to report in, but that in addition to the 5 a.m. elliptical work, she returned to the fitness center to lift weights for a half hour after the conference sessions ended today.)
Carol
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I'm at about 6900 steps for the day today, and 30 minutes of swimming and I'm bushed... You have my admiration...
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Well, I was completely off in anticipating my daily steps. I came in just under 16,000 steps, which gave me a little over 8 miles for the day. Went grocery shopping after movie and then took a walk around the neighborhood. Fun and exercise!
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You all are hard core.
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Hi everyone
This is my first time posting on this thread. I am waiting for a referral as my upper arm is slightly swollen. I am 18 months post surgery. I am scared because my friend has LE on whole arm. Not sure if my current situation means a sleeve straight away? Im 42.
Liz
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Carol has more energy than I do! Plus I have been having a great time meeting and getting to know some incredibly powerful people in the LE world. And working hard to get time for the exercise..... I was so paranoid that I would gain weight here but I put on the outfit I wore here on the plane to dinner last night and it is totally loose around the waist band. I will have to wear something else home.
One more half day today and my therapist and I have to spring to the airport and hope we make our flight. So no exercise. I hope to do so when I get home this evening.
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Jackboo, welcome
! Sorry about the LE worries, but you're smart to be taking care of it early, as that means being able to control it more easily. Yes!Depending on the stage of your swelling (your therapist will determine that) you may just go to compression garments and some helpful exercises, or you may need some Manual Lymph Drainage (gentle lymph massage) and/or wrapping for a while with short-stretch bandages. Either way, catching it early will make a big difference moving forward. (If you get a sleeve, be sure to get a glove or gaunlet as well, so that any swelling doesn't become trapped in your hand.)
More information here:
http://www.Stepup-Speakout.orgPlease do keep us posted, and tell us how we can help.
Gentle hugs,
Binney0 -
jackboo9 - I am your age. If caught early it doesn't have to get bad. Hope you can find a therapist soon who can help. I found a great one through the site Binney posted. It's important to find a good one and then do what they tell you. That's the hard part and why this thread is so helpful. ((((hugs))))
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Just went to my F2F yoga class, and no matter how much I avoid downward dog, or get into it and immediately get out of it, it gets my LE amped up. I think no matter what, there is going to be something in yoga that's going to get my arms cranky, so I'll just drain myself when I get home.
On another though, is there anyone else who washes garmets every flipping day?!? Jeez, I like MLD because it's like meditation, but washing garments every day is a PITA.
Welcome jackboo.
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Well ladies I have missed alot this past week... I am having trouble with arimidex again and the ONC said that he wanted me to get off and will talk to me about options in 6 weeks... First, I know diet is alot of it - which I have changed 2nd exercise, which I am having trouble with... I did get a pedometer that I still have to program... I so need help with this part... I live on a mountain that goes from 1200 and tops out at 1500 feet so kinda steep to walk.. by the time I get down the hill - 1 hour is gone of my time off... I have all the excuses in the book... I think I need to reread Binney's lap system - my house is not that exercise friendly.. Maybe take my 8am lunch half hour and make laps around the house again??? Help ladies I don't know how to get in my exercise, but without an AI I really need to be careful and lose the weight...
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nibbana - I was being prepped to teach BodyFlow (yoga, Thai chi, Pilates) at Gold's Gym. I loved it. I even still did it after my BMX with TE's. After I developed LE I continued to try but found it ALWAYS made my swelling worse. I haven't gone in about a year because it was so depressing. All I could focus on was what I couldn't do anymore and it took me to a very dark place emotionally. I went for the first time last Wednesday. I know I cannot do down dog but I tried a modified version and guess what? Swelling. Even with my knees on the floor, hands down...I still swell.
So I'm the same way. If I let it, it really gets me down because I was so strong before...and now I'm not. I mean, really, it sounds so simple...hands down...feet on the floor...why shouldn't we be able to do that? My next option is try a Thai Chi class. I love the easy, flowy movements, the breathing. I haven't tried a 100% Pilates class since LE. I so loved it before...I honestly think I'm a little afraid to try for fear I found out that I cant do it either.
I don't mind hand washing the garments. Just put a little warm water in the sink with a lingerie wash, swish it around and let it soak 15 minutes...easy peasy. I'd take hand washing garments to MLD anyday. ;p I hate it. Talk about a PITA.....
GmaFoley - Do what you can is my advice. Keep it simple. I'm thinking about buying a little trampoline to keep in my bedroom....jiggle that fluid right out of my fingers.
Get a video and do 15 minutes of whatever type of cardio you like...the ladies have talked about a Sansone (sp?) video. Just do something. Keep it easy. Keep it enjoyable or you won't stick with it. ((hugs))0 -
Ok, ladies, this is my report. I did the Lebed lymphatic opening this morning. I did not wear my garments because of cooler weather and simply because I didn't want to. Yes, I sound like a stubborn child.
I am now donning my garments and heading to the gym. Goal is at least 30 minutes on the elliptical, more if I feel like it and some ab work. Later, I'll do some MLD before bed. Promise. 
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Couple of thoughts: leslie sansone dvds are great for indoor exercise, because you can do them in a tiny patch of space. And the are well designed for building up gradually. Google walkfit and on her website, you can see some samples. On yoga, recently Kira bumped a thread with photos of adaped poses. I am typing on my phone, or would find it to bump again. Maybe search the threads to find it and see what you think?
I am on the way home from NLN and have a sigh....airline delay. So I am past 10000 steps and will get many more in before I can board my plane.0 -
Oh no Carol! Delayed again? Dianne and I left on time and landed at 5:20. After guzzling some water at her house I headed home and have started unpacking. I hope it is not a 1:30 am arrival again! At least you won't be waking me up this time!
Other than airport walking I did not get much in today. Will get up in am and start attacking the exercise again. At the airport my therapist did go over the weight training program she had prescribed for me and upped the anty on my weight training program. She did show me some moves in our seats and had me do them. I think everyone around us thought we were crazy!
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Wow, Becky, how amazing that you get therapy help while traveling!
I will be at my house around 11:30 at this point. Air travel stinks. But I did get my steps in, and as I was walking in anger, they were quite heart pumping because I was walking really fast.0 -
I Did It!!! - I got off my butt at my lunch time (8am) and walked the outside of my house - did 10 laps came out to 1 mile on my new pedometer.. DH set it up for me so that is why it is miles and not steps LOL... First time since surgery I have walked... Itis a beautiful and nice cool morning - I just need to get up from my computer desk and do it... Please I need a reminder to do this or it won't last
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Way to go Gma!
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Gma, that is terrific! Do it again, girl! Steps or miles, it makes no stinkin' difference. Either is a way to track your efforts.
Okay, now I am going to admit something embarrassing. I intentionally did not exercise yesterday because I wanted to limit the inflammation load on my body -- I had a dentist appt to have my teeth cleaned and examined. Normally this would not be a big deal, but I will admit that with the chronic pain, unknown implant issues, surgery and arm LE over the last two years, I had skipped my cleanings. Well, add to that I lost my regular dentist before all that and had not been happy with the last two I tried. So, I was in need of a referral for a good dentist and finally got one. I explained my situation and he made an appt for me within two weeks. He is awesome and I now have a new dentist I like and will get back to cleaning my teeth twice a year.
Anyway, I was concerned this teeth cleaning would stir up a lot of bacteria and create an inflammatory response and cause a flare, so I took my emergency antibiotics as a preventive the night before, yesterday and today. I also took a pain pill before the appt to minimize my body sending out all those pain signals that can trigger an inflammatory response as well. All went very well, and it turns out that in spite of a period of neglect everything looks pretty good. He said what saved me is the fact that I floss daily. Had a full set of X-rays taken and scheduled followup appt next week to see where everything stands and probably will have night guard made to protect my teeth from nighttime grinding. This is more than all of you all want to know, isn't it!!! Anyway, this is one more thing out of the way and another step back to "life before BC". I had been so incapacitated by chronic pain, that I allowed somewhat of a mountain of unfinished/ignored tasks to accumulate. I am slowly tackling bit by bit, and it is such a relief to be about halfway done!
So not only does my tortoise mantra apply to my exercise routine, but it is relevant to my home and other aspects of my health: "Slow and steady wins the race!"
Today is such a beautiful day that my goal is to get out and take a nice long walk. I hope everyone has a great day!0 -
UH OH... My nerve pain in the breast is UP now... Started moving things with the walking??? Oh God it hurts!!!!
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