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

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Mar 7, 2012 07:32PM

Tina337 wrote:

Let's use this thread to post the exercise and methods of self care we are practicing each day to keep our bodies strong and our LE at bay. After experiencing a flare in my arm when I hadn't been as diligent in caring for my truncal LE, I am motivated to begin exercising regularly, performing MLD daily, and wearing prescribed compression garments. Rather than fall down on the job and become overwhelmed by this chronic condition, I want to challenge myself to kick LE's butt into a small, manageable corner! I started today. Here's what I did.

I still have my arm and hand wrapped, and I am also wearing my compression tank with round swell spots on each side in the underarm area 24/7 as per my LE therapist's instruction. This afternoon I did the entire Lebed DVD. Woohoo! It's a start. Yes, that DVD is still creepy! I'll have you know I continued with the exercises even when my husband unexpectedly walked into the room. I started making fun of the DVD, which was kind of fun, so I continued for the rest of the program taunting and making fun of the weird instructions, cheers, and "dancing!", etc. It actually made me feel more powerful and in control, and I liked that!
"Life isn't about finding yourself, life is about creating yourself." ~ George Bernard Shaw Dx 11/13/2007, DCIS, <1cm, Stage 0, Grade 1, 0/1 nodes, ER+/PR+, HER2-
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Apr 20, 2018 01:50PM kae_md99 wrote:

thanks ladies! i am on 1 lb weights and i do stretches too. can i use swell spots at night? i would appreciate a picture of the night garment..so as long as i feel heavines,not necessarily swelling,i should be wearing the garments right

kae, 1-10-17, IDC,2.5 cm, right,er,pr,her2 (+),grade 2;DCIS, left, er,per(+),grade 2; 2-17-17- Taxotere, Carboplatin ; 2-17-17- Herceptin , Perjeta; july 14,2017,BMX,TE's,SNB,0/3;8/2017,Zoladex;1/26/2018,Arimidex
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Apr 20, 2018 02:30PM - edited Apr 20, 2018 02:31PM by hugz4u

Good your starting with light weights. If you mean, you feel heaviness should you wear day garments. Yes. Anything that feels abnormal indicates something internal is going on.

Swell spots are great alternative if you have no night garment. I'll wear at night if I'm flaring. They channel fluid out of the area. Night garments are the cats meow. Unfortunately we can't seem to get a good fit with mine so I don't wear it. It rides up into my arm pit. I'm ticked cause they adjusted it but it's still not good. There expensive. Maybe if I lose some weight it will stay down. I'm working on that! They look like a mummy wraped in bandages or a big ovenmitt that's extends down your torso. NOT sexy in the bedroom. Ugh dang

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Apr 21, 2018 12:07AM kae_md99 wrote:

i feel heaviness everytime my arms hang down so i guess, i am resigned to wearing the garments for life?....

kae, 1-10-17, IDC,2.5 cm, right,er,pr,her2 (+),grade 2;DCIS, left, er,per(+),grade 2; 2-17-17- Taxotere, Carboplatin ; 2-17-17- Herceptin , Perjeta; july 14,2017,BMX,TE's,SNB,0/3;8/2017,Zoladex;1/26/2018,Arimidex
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Apr 21, 2018 12:27AM - edited Apr 21, 2018 12:30AM by hugz4u

kae,so you will want to build up to wearing them for a full day till bed unless you are use to them by now. for life. I only wear mine 10-12 hours a day because I can manage my Le doing this amount of time and my elbow crease is so sensitive that even with silicon tape in the crease it gets sore so I'm on limited time.

I don't have your heaviness symptoms unless I am gardening for hours then I know I need to go in and wrap my fingers in compressive gauze and arm in a soft cast like short stretch bandage to get things back to normal. I try not to overdo it in the first place. That is the gold standard care if your having a flare or need to get your arm swelling down.


Get Custom garments made. They are the way to go if you can afford. They fit so much better. Not many can wear off the shelf but it's a start and you might fit them.

Rest those arms on pillows or back of sofa as long as it's not tiring whenever your relaxing. Above heart is good but be comfy so even a bit of elevation is better than nothing. Dangling arms can send fluid to hands depending on your condition. See what is helpful. Try raising your arms above your head like your eager to answer in school when their heavy, and pump fists slowly 25 times to drive fluid back up the arm. Do a few times a day.

Go to stepup-speakout.org a great website some smart le girls here made for all your lymphedema education and needs. And do ask questions here.

Knowledge is key and having a educational toolbox for lymphedema emergencys is essential to success. Yes it's for life unless your early stage and you don't sound early stage. Be very proactive and you will stay on top of it controlling it instead of it controlling your life. Ok I gotta spilt. It's getting late

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Apr 21, 2018 09:12AM kae_md99 wrote:

thanks hugz!!!

kae, 1-10-17, IDC,2.5 cm, right,er,pr,her2 (+),grade 2;DCIS, left, er,per(+),grade 2; 2-17-17- Taxotere, Carboplatin ; 2-17-17- Herceptin , Perjeta; july 14,2017,BMX,TE's,SNB,0/3;8/2017,Zoladex;1/26/2018,Arimidex
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Apr 21, 2018 03:20PM - edited Apr 21, 2018 03:28PM by Vargadoll

Hugz and Binney-I wish I had started following this LE thread a year ago! I'm almost certain I had LE straight out of surgery and had I found you girls I would have got into PT sooner and possible even gotten things under control much faster. I'm still learning and hope that one day I an help others like you girls help us! Minus two and 2fun you girls are awesome to!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 21, 2018 03:48PM - edited Apr 21, 2018 03:54PM by hugz4u

Thx but I'm not really an true expert,still learning and as you know le can be different each day so it's never ending learning. Binney is our all time knowledgeable LE guru and did contribute so much time to the stepup-speakout.org. website that we all need to be on for excellent Lymphedema education. Binneys AWOL right now dealing with family illness. I miss her very much here and hope her family has a speedy recovery. She is a true blessing, Awesome indeed.

We just got to stick together and fight le as a team. Doing it alone is not constructive to mental and physical health.

Some one I miss much is Carol57 who also wrote the exercise guide in the stepup-speakout.org site. She was the true exercise guru who was also the frequent flyer guru and had put in many miles walking at the airport on at least a weekly basis. I met her in person. Such a lovely personable gal. Another gem. Look up her threads for flying and exercise. She got me into the PAL exercise program with gradual weightlifting. Much thx to her I'm in better shape than ever and controlling Le partially thru exercise.id love her to pop in once in awhile. She’s a busy girl and sometimes we just need to move on.

One way we can all help if we don't have lymphedema answers to newbies is guiding people to the stepup-speakout.org site. Very comprehensive. You can even find a therapist in your area on that site.

I really appreciate those posting on the le surgery threads. They are breaking ground for us and gives us the good bad and ugly of the surgery. This is essential for us because le surgeons don’t do too much follow up years down the road and so it’s good to get their opinion. Much thxto them for taking out the time to check in.

I worked out yesterday and am going for one hour walk today. Sunny but cold. Looking at whitecaps on the water out the window. Garden calling me to.

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Apr 23, 2018 04:28PM - edited Apr 23, 2018 04:28PM by hugz4u

finally some sun for next two weeks. No excuses for me. I'm better now and dog is looking a me with THOSE EYES! Went to gym today. Not the best cardio but we're getting there.

My new cool down seasonal drink. Herbal lemon-mint tea with green tea/herbal lemongrass. Steeped, cooled and shaken over ice. Poured into mason jar with straw. Looks good! Delish! Just enough caffeine for a light boost! Shhh ...don't tell Starbucks but I'm putting them out of business with this yummy go to.

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Apr 24, 2018 10:04PM Vargadoll wrote:

I got my night garment back today! I had to have it altered because it was riding up. The zipper would almost be over my mouth. I will lost a picture of the handout that came with it. Only difference is my glove is not attched. The picture not load. I'll try to post it separately.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 24, 2018 10:10PM Vargadoll wrote:

Top picture is my garment. The second picture is the compression cover that goes on top. Bottom picture is the flyer. You will see my hand is separate. My DH calls it the ove glove.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 24, 2018 10:11PM - edited Apr 24, 2018 10:12PM by Vargadoll

This should have been the top photo. It disappeared from my previous post.

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 25, 2018 03:01AM hugz4u wrote:

Vara Mine is identical to yours. My jovi wants to do the same as yours but doesn’t ride so high and they already adjusted it once. Mine wants to ride up about collarbone height and this makes it ride into the pits also. Speaking of pits. It is the pits when you lay out this much dough and your not comfy. Mine is blue coloured with black jacket.

Had good walk today

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Apr 25, 2018 12:53PM Vargadoll wrote:

I'm afraid to ask how much they cost! Insurance has covered all my compression gear and 2 Belize bras. They are disputing my Flexitouch pump now they're saying that pre-certification wasn't done but it was. I've got the Plexi pump so good luck with anybody getting it back!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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Apr 25, 2018 09:00PM hugz4u wrote:

Vara. No worries, it’s good to share info. If I’m correct mine was 1700 without jacket. I later got the jacket because with the new tailoring they suggested overjacket to hold it down better. Not working though. I’m truly not sure but I think jacket was six hundred. Cnd funds. Is that in line with yours? I think my fitter charged me less. She try’s to. Insurance covered bit.

Good workout

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May 1, 2018 01:45AM - edited May 1, 2018 01:45AM by hugz4u

I huffed and puffed at the gym.... but I did not blow the house down! I tried though.

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May 10, 2018 05:00PM hugz4u wrote:

Killing it at gym but it’s killing me. I’ve lost a lot of strength but that’s ok I’ll keep at it. How’s everyone else?

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May 10, 2018 05:48PM MinusTwo wrote:

I went to San Francisco a week ago - so I missed Silver Sneakers class. Boo hoo. Unusually it was clear blue skies - no marine layer, no fog - 66 in the day & 56 at night. I walked from 5-10 miles every day for 4 days. When I got tired, I got on a bus & rode for awhile in the direction I was headed. Or I stopped for lunch or a glass of wine. Perfectly lovely time. I can walk forever - just not very fast because of the neuropathy. And boy were my calves sore because of the hills. Houston as absolutely FLAT. Had a great time. Ate sourdough bread & butter for every meal including breakfast - crab every lunch, other grilled or sauted fish selections at night. YUM. Drank 2-3 glasses of wine a day. And because of the walking, I didn't gain even one pound.

Yesterday I was back to Silver Sneakers. I will be hitting it hard since water aerobics will start in 3 weeks.

No problems with the LE. I wore my Belisse bra on the plane with Juzo custom sleeves and Mediven gauntlets. I thought of you every hour Hugz as I pumped my arm & hand out into the aisle of the plane.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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May 14, 2018 05:30PM - edited May 14, 2018 05:35PM by hugz4u

Minus. Good for you for pumping. I've been a bit lazy this month but vow to step it up. Lots of distracts and general laziness. Hum,just slapped myself to get busy! Still going to gym just need to increase outdoor walks. Gym day

Good for you for all those San Fran hill climbs, kudo

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May 15, 2018 01:14PM - edited May 15, 2018 07:20PM by hugz4u

50 min walk. Slam dunked it!

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May 15, 2018 03:07PM MinusTwo wrote:

Made it to Silver Sneakers this morning. It's only Tues & Thurs and I'm a bit sore after I missed last Thurs.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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May 15, 2018 06:47PM Vargadoll wrote:

I have been averaging 10 miles a day for weeks now. The LE is (everything I got crossed) not giving me any issues. I am still keeping my routine to manage it going. I hope to stay on the good side (if there is one!) of the LE.

Keep moving!!

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 15, 2018 07:26PM hugz4u wrote:

minus. It’s weird how we can exercise like crazy and then let a few days go by and get sore again. I guess it’s our body telling us to stretch etc. Stretching kinda keeps it at bay for me. Me no exercise guru though.

Vara. WOW Good for you. How long do you walk each day? I get really antsy to go home after a hour and prefer 45 min. And only five days a week. But my body needs more! Sometimes I do.

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May 15, 2018 08:21PM MinusTwo wrote:

We've been in the 90s for over a week now. That makes walking outside very warm - LOL. I'm probably moving to the treadmill until October.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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May 15, 2018 08:33PM Vargadoll wrote:

I have a Fitbit Alta and I am nonstop motion all day. I only sit down for dinner and if I'm driving. .lol if I have time for my treadmill I can do 3 miles in just under a hour. All of my steps are housework, laundry, delivering meals on wheels and chasing the kids! I deliver MOW 2 or 3 times a week and I do an apartment building so I'm actually pushing my girl in her wheelchair while I carry the meals in a thermal bag and she holds the cooler with the beverages on her lap. Lots of steps there.
"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 15, 2018 11:09PM hugz4u wrote:

Varg. Wow impressed. I don’t have fit bit but stand or move most of the day doing errands. Then sit a bit at night. I don’t sit well due to siactic nerve burning when I do. Up side. Not sitting on that nerve keeps me going and going and going. But why amI not skinny as a rail?

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May 16, 2018 08:20AM Vargadoll wrote:

I always do a work week hussle with several other girls and I am always 50,000+ steps ahead of them and I ask myself why and I not 90 pounds soaking wet....haha! I am walking miles around these skinny girls...lol

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 17, 2018 12:37AM hugz4u wrote:

Ok after being bed ridden first half of April I am finally able to jog a mile at 5mph today with heart rate 145. I feel I’ve turn a good corner today. I’m going to try and walk more since I fell off wagon due to flu/cold.

I’ve just got to keep at it. How about the rest of you reading. Why not post, no competition here just personal goals. We all help each other.

Come on join in

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May 17, 2018 02:40PM - edited May 17, 2018 02:40PM by Vargadoll

Hugz- glad you are feeling better. Way to make a come back! I have some goals I want to reach and I feel that I am heading in the right direction after the slowest come back in my life!! Surgery was in February 2017 and I am just now feeling like moving again. I was very active before BC. Zumba 2-3 times a week and walking at least 5+ miles a day. I have been to Zumba since diagnosis. I feel that the LE and Tamoxifen held me back. Which I was going to post a few things here..is is possible the Tamoxifen made my LE worse? I was in PT/OT every week from March last year until mid February this year. I was switched to Anastrozole in March and my LE for the first time since diagnosis is not an issue. I' doing nothing different which makes me wonder about the Tamoxifen. Since I have switched to Anastrozole I'm not hungry all the time. I've lost 8 pounds and my muffin top is shrinking! I didn't realize how hungry I was while taking the tamoxifen. So...here's my goals...within the next month I want to get back to zumba at least once a week, keep getting my 25,000 steps a day and get back to my arm workout and possibly start running again. I have an adult child with multiple handicaps in my cate 24/7 so I do have so limitations on accomplishing my goals a little bit. I have a treadmill so I can run there as long as I get to it before she wakes up. If my DH is home early enough I can make zumba class. My oldest grandson always stays with us through the week so while school is in I drop him off each morning he rides the bus home. How's that for a start??? I can do it right? ??

"She is clothed with strength and dignity; she can laugh at the days to come" Proverbs 31:25 Dx 12/23/2016, IDC, Right, 1cm, Stage IA, Grade 1, 0/3 nodes, ER+/PR+, HER2- Surgery 2/6/2017 Lumpectomy: Right Radiation Therapy 4/12/2017 Breast Hormonal Therapy Hormonal Therapy Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
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May 17, 2018 03:10PM hugz4u wrote:

Varg. I didn’t have le on tamoxifen. Contracted once done.

I know tamoxifen made me gain weight and sore bones but the drug your on really did a number to my bones.many years later and so stiff now my hands wake up feeling like baseball mitts and no strength in hands. Arthritis for sure. Feet to! If I don’t move I seize.

I’m accident prone and worried if I’m laid up I will seize completely. My muscles get very stiff to. People at gym comment how flexible I am cause I can stretch into a backwards summersault. I tell them im stiff and if i dont stretch daily im literally shrink up.

WOWYou have a lot on your plate with kids etc. Don’t overkill or you might get discouraged if you can’t fit the time in. make sure you have time to exercise and relax a bit!I know that’s hard. I have 93 yr old mobility impaired feisty mom to watch over. Doesn’t live with me but I’m constantly hands on helping. Getting back to Zumba sounds encouraging. I do like your zest though!



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May 17, 2018 04:41PM carol57 wrote:

Hugz4u, hello! A little bird told me that you'd mentioned my name, and while I don't stop by BCO much these days, I'll be ever, ever grateful for your friendship and that of so many other amazing women in the LE forum and elsewhere in BCO. My LE is --dare I say this--pretty tame anymore. It doesn't bug me unless (1) I'm crazy with my kayak paddling or otherwise over-do things, or (2) driving long distances with what DH says is my iron grip on the steering wheel, or (3) there's a storm brewing or dropping precipitation on my head. So, I'm feeling quite fortunate, and I don't need as much girl support as I once did.

I'm still in the gym twice or thrice per week doing the weight lifting, still working often with a wonderful trainer who hosted a PAL workshop a few years ago, presented to area personal trainers, LE therapists, and a group of OTs and PTs. The presenter was Cathy Bryan, who was the lead trainer during the original PAL trials, and she was wonderful. If anyone seeing this would like to be put in touch with Cathy, do PM me. I believe she's still taking her program on the road.

I tend to believe that all the years of consistent strength training have played a big part in taming my LE, but I also know that there's a certain amount of just plain luck of the draw. I hope everyone's finding ways to exercise that help the swelling, wearing the @#!@ sleeves even when pumping up heart rates in hot weather...and feeling you're doing what you can to move the LE needle in your favor.

And Hugz, I wish you could transport all of us to your drop-dead gorgeous sea-side walking path!

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