Kicking LEs butt!! Exercise & Self Care Log
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Tina, every time I look at your avatar I am so struck by how vibrant it is. You said it's one of your drawings, and I am very curious to know what medium you used to draw in such bright colors. From the tiny avatar photo, I would have thought paint. And am I seeing rays of sun in there? It's a great mood lifter! --Carol0
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Carol, they are felt-tip markers. I use a set called "100 Markers" which are made in Italy. I've purchased at different craft stores and they run around $25, but I always grab an extra set when I spot a 50% off coupon. They have subtle variations of colors which are beautiful, and, yes, vibrant. When I travel, I take a smaller Crayola set that has a flat plastic case that fits nicely in a suitcase. They are $10 or less, but the quality of the marker isn't as nice. And you are correct about the rays of sun!
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Got so excited about your question, Carol, that I forgot to check in! My husband took a walk with me tonight in the hilly neighborhood. It's feeling a little easier! I am late in getting into bed tonight . . Cannot promise full MLD, but will do at least nodes and torso. Who knows, once I convince myself to start, I often get on a roll and do the whole thing.
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Slug day . . . Somebody kick my butt!! Still have to do MLD and will take a walk around dinner time.
Carol and Becky, how are your LE side effects today? Carol, I almost said, 'How are your breasts today?' and realized how strange that sounded. Only here can we ask those kinds of questions!0 -
Tina, I have work, and then a committee meeting, so I won't get home until late, I did do MLD this morning, and yesterday walked the dog.
Desperately in need of a swift kick here also.
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Kira, one size 8 1/2 sneaker coming at ya!
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Kira, if it helps, I'll launch two sneakers your way.
Tina, yesterday's 'bust out' swelling got even worse after the early evening cardio, and my entire abdomen became quite swollen. I have a scar below the belly button that runs fully across and goes back several inches on each side, and I often get some swelling just above that scar by the end of the day. Getting fluid to move under that scar toward the inquinals is not very likely, so when it happens I try to scoot it north toward the cleared neck nodes. So last night I did slow and prolonged MLD, and fortunately, this morning the breasts and abdomen were back to normal. It's 85 and humid here, so conditions are ripe for a repeat of yesterday.
I think this daily swelling (and even yesterday's heat-induced swell-fest) might still be post-surgical swelling from my mid-December diep stage two, which included liposuction to the abdomen. My LE therapist thinks that might be the case too, although we're right at the 3-month mark so it's hard to say for sure. My PS tells me that six months to a year for lipo-related swelling to resolve is not unusual. I think I would be mighty unhappy if I did not have MLD as a tool to help with the post-surgical swelling.
Oddly, my arm and the usual truncal spot are just fine today, even after 45 minutes of treadmill cardio and an hour of weight lifting in the gym. My midsection is again a little swollen, but not as bad as yesterday and the breasts seem fine. So far!
I'll be drinking tons of water and ending my day with MLD. Lebed? Maybe...
Carol
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I'm back on track after a few lax days. Just finished a sunny 1/2 hour beach walk with the tide out.lebed next. I am already feeling better just knowing that I am helping my body by moving even though I am not the marathon type.
All those that haven't fulfilled there exercise goal today need the oh so gentle budge.... GET THE LEAD OUT! Come on! Just move those arms and legs girls and then a big drink of water with maybe some lemon in it. Reward: sink into a couch or fall into the couch depending how hard you moved.
You will feel so much better once your done!
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Kicking LE's butt all the way to the beach and then shoving it out to sea to drown. Did 1/2 beach walk and now lebed. All those need motivating here goes! GET THE LEAD OUT! EXERCISE YOUR SELF SILLY.COME ON! KICK THAT LE RIGHT OUT INTO THE UNIVERSE and then thank yourself for doing your body a favour.
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Hugz, what beach are you lucky enough to be able to walk?
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Hugz, thank you for that. Leaving THIS MINUTE for a jog!
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Sorry you are having these side effects, Carol. No fun at all. Glad the thorough MLD worked last night. I know you have UA shirts but can't recall if you generally wear tanks or bras. Do you have a compression tank or shapewear you can wear so there is no binding underneath the breast area when that swells? The tummy area sounds quite uncomfortable. Hope it's better tonight.
Hugz, you are terrific. Thank you! Since it is now dark out, I have no choice but to walk up and down the stairs inside our house. Lebed to follow.0 -
Becky here...Accomplished all I set out to do EXCEPT my diet at dinner. Trip went okay. I stopped 3Xs at rest parks and walked briskly for 10 min and pumped arm. Stayed hydrated. I just finished MLD and arm seems ok. We will see what tomorrow brings. Jovipak is on and does seem a little more snug..
Love your motivational technique Hugz.
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Tina, I wear either UA or compression camis most of the time, but I have a spot in one of my recon breasts that tends to collect a bit of fluid, and my LE therapist suggested more bra wearing to help that, and she was right--it's much better in a bra. The camis feel fine when the breasts are swelling, but they don't seem to give enough support in just the right spot. When the breasts are acting up, funny but it's the top of the bra cup that bugs me, not under the breast area. Isn't LE anatomy special! (If this is LE..I'm still hoping that it's post-stage-II surgery swelling!) (A girl can dream, can't she?)
Becky, it sounds like you triumphed today, because car travel is so confining, and you just want it to end, so quite often I think we are tempted to just keep driving and not take time to get out and move. So dinner notwithstanding, give yourself a 'wow' for today.
Carol
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Oh--flying to San Francisco tomorrow, and I'll leave home at 10 am and get to my hotel around 10 pm eastern, twelve hours of potholes in LE-Management Road. I do have a very long layover, so I guess I'll be trotting through the corridors in Minneapolis. At least it will be air conditioned!
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Wow. I didn't realize typing in Capital uppercase could motivate you girls so fast! Man your easy to get moving! Way to go all you girls! Excellent!
Carol, I live on the Wet, I mean West coast. Vancouver bc. I have a week off and the weather changed from rain to sun and will be nice the next two days. I hope. Those tidal walks really shake up the winter and bring in spring faster. I was so refreshed from the ocean breeze that I came home and later gardened for 3 hours, comming in due to the dark. I hope I can count this as exercise! Back killing me. When I took my jacket off,I realized my sleeve slipped down to my elbow. I hope I didn't start a stupid LE flare. I was weeding, raking and transplanting, lots of arm stuff.
Question:Can we sleep in underarmour? My swelling is minimal if I don't wear bras and stay in shapers during the day. Wondering if that would be a good substitute for night stuff.
Becky; You sound like my kind of travelling partner. I do the exact same thing as you. Good job!
Must go.. Have a handwashing date with my dirty gardening LE garments.
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Becky... Yes. I LOVE to exercise. It keeps me sane. And I have a multitude of other reasons why I do it (most of my family members are morbidly obese and I fought an eating disorder all through high school - exercise saved me from my demons) but sanity is the main one. I use it to blow off steam when I am hurting, or angry... Or both. A couple of years ago I miscarried at 11 weeks. I was devastated. It still makes me a little sad to think about actually, but at the time I was so, so angry. I couldn't get through it. I was angry at my family. Yelling at everyone, crying spontaneously. I finally went to the gym and hopped on the treadmill. And that is where I stayed, with tears running down my face until I could not go anymore. It is cathartic for me. And, just like anyone else, I have days when I just don't feel like doing anything - which is usually a sign that I need to get moving, and days where I am just physically tired- which is usually a sign for me to allow myself time to rest. It is extremely important to "listen" to your body. Sometimes we just need to back off a little and we will feel better the next day.
I love to ski. I love the smell of fresh snow and the feel of my legs working like a couple of pistons. I love taking jumps like a teenager and finding a fresh powder stash no matter how far I have to go to get to it. And I love to go fast. I will ski until they tell me that if I take another run I am going to have to hike back to my car (our mountain has a mid-mountain access, so if you ski down after the chairs have closed, you will be hiking back up to your car!) I love to ride my bike. It is almost the same feeling I get skiing - but atleast skiing I don't have to worry about cars! I love zumba and weight lifting. I like to run. I tolerate swimming, only because I have to do it to participate in triathlons, but it is really not my favorite. There are so many things you can do... It is just finding the activity that you love and trying to stick with it. I used to resent having to wear my sleeve to exercise, but I don't care anymore. I am back to doing the things I love and if my crazy sleeve has to be a part of all that, so be it. You ladies are all doing soooooooo awesome! Keep up the good work! I am cheering you on!
Oooooo, yes, another thought is to watch for overtraining as you start getting back into things. Inability to sleep and an increased resting heart rate are two things to watch out for. If either of these occur, back off a little. If it does not get better after doing that, check with your MD. Otherwise, you go ladies!!!!! woooohooooooooooo!!!!!!!!!!0 -
Nordy, you are simply the best cheerleader! No, not cheerleader: COACH! What a fabulous and affirming post. I don't know that I'll ever find the zen in exercise, but afterward, I alwaysI feel really terrific and ready to continue with whatever I might have reluctantly put aside to start the dreaded exercise. So I guess I get a post-exercise sanity boost. But I sure do have to nudge myself to remember the 'after' to help get my rear in gear to get started.
Thanks so much for posting!
Carol
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Hugz, your uppercase cheer motivated me to climb 300 steps inside my house last night without stopping. I was winded and sore afterward but glad I did it. Thanks again. You are funny! Since my LE therapist has me wearing a shapewear tank to sleep, I would think an UA shirt would be fine to wear.
I wore a compression tank all day yesterday and one to bed, but no sleeve or glove during day. And I will fess up and admit to no MLD all day. Or Lebed. Nodes only. I did some drawing last night. Since I use that as a form of meditation and relaxation, I focus on breathing quite a bit and did a number of deep breaths over an hour's time. Always makes me feel great.
Hey, Nordy, so good to see you here! Thank you for sharing about how exercise came to be a way for you to cope and bounce back from adverse events. I'm so sorry about your miscarriage. It must have been really tough. You certainly have had more than your share of life experiences thrown at you and had to dig deep. This is why you are truly an inspiring woman and a great source of motivation for us all. You didn't let LE keep you down - you have continued to participate and live life to the fullest. I really appreciate your stopping by when I was on the cusp of becoming a little lax. Last night I promised myself I would get totally back on track with MLD today, and I will. You all heard that!0 -
Wow. Nordy, you are an inspiration and truly a COACH. Sounds like you have activity endorphin overload 24/7, nice hey! I hope you check in every so often to boost us up. I am definately not addicted to exercise. thank you soooooo much. Your a gem.
Nordy,I want to ski too but quit as I was afraid to fall on my arm. Do you fall much? I took up snowshoeing instead and boy that is work, No wonder I only go twice a year. I am also afraid to bike, but do a little carefully. What do you do to keep the fluid in your arm in check when biking? Sleeves/gloves/underarmour like us? After all your arms are down quite a bit. This is one one the reasons that I am considering slowing up on my most favorite thing.....Gardening, my arms are down for hours.I don't have the control to stop and rest as I just want to garden all day. As you can see I am quite protective of my arm and it has stopped me from living to the fullest. I am afraid I will make LE worse. I dread the thought of flying. I thought I might swell this morning as my sleeve rolled down to my elbow and I didn't know it when gardening yesterday but I seem fine today. yeah.
Tina. 300 indoor steps. awesome girl! Do you listen to an ipod when doing them? Did you stretch out your legs when done? When I am on my step program ,I do 16 flights but stop after every four to stretch ham/quads/calfs. It releases so nice that I can climb another 4 much easier. I get winded too so when I stretch that allows me to catch my breath. I just can't do 16 flights non stop anyway.
I think I will try sleepig in underarmour tonight. It is so tight that I am hoping it won't twist and constrict under my armpit. Does it stay put? I move a lot at night. I can see a tank not getting caught up under the pit, maybe that is better.
Carol. I see your flying again. Please take out at least 15 min to do lebed opening. Can you squeeeze in a 15 min walk somewhere? Liift up your arms and pump your fists when walking You can do this in a public bathroom if you need privacy. I do this at work bathroom most times I go potty, as I sit all day. I am going to request a desk that converts to standing mode also.
Becky/Kira/Binney and any others I missed. We just Gotta exercise! It's a prescription for us.
If you don't feel like exercising then I want you to at least do finger exercises at your desk. Finger up. Finger down! Come on, you get it! Just move any body part.
Going to beach today to walk. it is only about 46 degrees but blue ski out here. maybe gardening later.
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I wish I was checking in here on the home computer, I need the emoticon that blushes! You guys give me WAY more credit than I deserve. I am not a model patient, for sure. But my thought is, what is life worth living if there is no QUALITY to it? For me, I would be a disaster if I could not do the things I love, so I do them , sometimes knowing there is a price I am going to pay. For skiing - no, I am not afraid of falling. I do fall once in a while, but it is rare (knock wood!). I learned to ski when I was 3 and except for about ten years off - split up here and there, I have been doing it ever since. We have taught my girls to ski the last couple of years and it has been tremendously rewarding. Another year or two and they will be sailing along! As for cycling - yes, I pay for that. I wear a compression garment all waking hours for the most part, so definitely during cycling as well. I change hand positions frequently. I do not wear a glove, but do always wear some form of cycling glove, which seems to help keep fluid out of my hand, despite that that was not what they were made for. I will do shoulder rotations (arm circles) during my rides and fist pumping as well. Plus having good posture and body mechanics during your ride will help - think tucking your shoulder blades down and across to the opposite back pocket. This keeps your shoulders from rounding forward and in addition to helping prevent increased swelling, it also keeps your lungs opened up so you can take some deeper breaths. If I am going to do a long ride (think 45 miles or more - or on a really hot day) I expect to use my flexitouch once or twice in the days after to bring things back to baseline. I personally consider it a small price to pay, but we all choose what we are willing to deal with, right? People always ask me what exercise is best... I always say the one you like enough to keep doing...
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Nordy, you write so beautifully and vividly and it IS inspiring.
I think we often get focused on our limitations, and trepidations and to hear of your legs pumping like pistons in the powder snow shifts the whole discussion. And the treadmill after you lost the baby: I wanted to cry, hug you and cheer you on as you literally worked through it.
This thread has got me moving. Walked the dog when I got home from work today. MLD before work, and the more I move, the better I feel.
Saw a young patient with LE today (been seeing studies that young women get it more often than older)--came on after a cut on her finger, 3 nodes out, but chemo and rads, and she's working on wrapping, and I found myself coaching her on exercise. Sure, we talked garments and MLD, but exercise feels more proactive and in control. No I didn't tell her to go hog wild: essentially I tried to cut and paste what Carol wrote.
A 45 mile bikeride was something I could do a long time ago, but I'll try some rides soon. Not just on the stationary recumbent, watching Animal Planet....
Kira
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I have some catching up to do on the conversation here! First, Tina I am in awe of all those steps without stopping! Not only because you had the stamina to do it, but because you had the will to keep going after it inevitably got boring (after three or four flights up and down the same steps, I would be crafting all kinds of reasons why I needed to do something else). That's really amazing.
Hugz, I have slept in UA many times, initially to humor my plastic surgeon who wanted me in compression 24/7 for a long time after one of my surgeries, and then because I found I slept better with some support on my troublesome truncal LE. I've never used an official LE night garment, but I know that they are less compressive than day garments, so I rather imagine the UA compression accomplishes something similar for mild LE like mine. Of course, just because it has worked for me and caused me no grief doesn't mean it works well for anyone else. One of these days I will ask my LE therapist about a night garment for when I get really puffy, as in this week's heat. I have really put off having that conversation, because generally my LE is very manageable, and well...I just don't want to admit I have 'serious' LE. Not very grown up of me, I know.
Nordy, after the biking thread we had going a few months ago, I took my bike to the neighborhood bike shop and my friend the owner put an extended stem on it, so I am all ready to give it a try. He tuned it up, and then tuned up DH's bike, too, so soon we'll give the bikes a spin to see how I do. We have some wonderful trails nearby, including one former railbed that runs 25 miles or so to Lake Michigan. People are crazy drivers on our rural roads, so I prefer to peddle in a protected place. I won't be attempting 50 miles the first time out, that's for sure. Nordy, are your girls cycling alongside you?
Tina, I believe you had your bike adapted for higher handlebars too, right? (hint) You're the one who got me moving on adapting my bike. (thank you!)
Kira, it is really wonderful that you're in a position to encourage LE patients to use exercise to take charge and do something proactive to beat LE down, instead of letting LE beat up their spirit. And as for your own exercise, walking the dog brings so many rewards beyond the steps you take. Especially after any day when work tries to get the better of you, dogs just want to be your friend, they absolutely love a good frolic of a walk, and they motivate us to stay out longer than we think we want to. My dog is a terribly undisciplined walker (trainer's fault, i.e. mine) so I tend to play with him in the yard more than take him on official walks, but the effect is the same. There's not much better than watching a pet bounce around celebrating the joy of being a dog.
My LE care today: I took two flights to get across country, twelve hours from door to door, with a long on-the-tarmac flight delay to keep me cooped up longer than expected. But--I did have 2 hours in my connecting airport, and I spent one of those in speedy motion. I actually went in the ladies room and put on my heart-rate monitor strap so I would be sure not to take a leisurely la-dee-da stroll. I managed nearly the full hour in 'fat burning' zone. Pedometer says I did 5.2 miles in total today. I woke up to MLD, did tons of kegel breaths in the airports and in the airplanes, as well as neck clearance quite a few times. Pumped fist in the air a lot and walked a little bit during the 5-hour flight, probably not enough. Drank several bottles of water in flight. Have I mentioned how much I hate airplane bathrooms????
No Lebed today, but I will end my evening with MLD.
Carol
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"The more I move, the better I feel" - Yes, Kira! I am with you on that.
I was just quizzing my LE therapist on Tues about when I could ride my bike. All this beautiful weather has me wanting to GO! Knew I'd have to wait until custom sleeve and glove arrive. She also wants to make sure my arm is stable before I start stressing it. Need to be a little patient, but it is feeling so much better! Today I had to show up for MLD with my arm completely wrapped by myself. Therapist critiqued my job and said I had wrapped it perfectly as far as sequence and gradient pressure. I felt it was a little too loose, and I knew it was related to my difficulty in trying to keep appropriate tension while moving arm as I wrapped. She gave me tips on how to stabilize bandage and make my way around arm without bending. I have one more appt with my therapist next Fri and will return when all of my garments are ready. Knowing how to wrap makes me feel much more secure and prepared for a flare and traveling.
Errands and appts throughout day, so no outdoor exercise. You guessed it. I got to do the stairs again! Tonight: 400 steps. Muscle memory is kicking in. Off to get in bed and do MLD.0 -
Carol, I was writing when you posted. So funny we both have biking on the brain! I am going to see how my handlebars feel the way they are but will definitely modify if necessary. Isn't it great we have our bikes all ready to go?! I cannot wait, and this weather makes being patient so difficult. Right now I am having an evil thought that I might cheat and ride around the block tomorrow . . .
About the "serious LE" conversation, I totally get it. I feel that way about my arm. I'm sort of still holding my breath and not quite willing to say I have arm LE. Pretty stupid, huh? While I had been trying to address it for a while (I recognized those minuscule sensations I experienced prior to developing truncal LE), the insurance and timing wasn't on my side. I really hoped I could catch before there was measurable swelling, but my therapist is hopeful that with diligent care I can reverse. However, I am truly worried about the approaching warm weather. My first summer with LE was no fun, but the past two have been much better. I hope with all your proactive LE care that this is just a time of adjustment for your body. It really is still learning how to build that new infrastructure and the heat probably has it a little overwhelmed right now. I am holding up a yellow "Under Construction" sign for you. :-)0 -
Tina, I will wear that 'under construction' sign with pride! And 400 steps? That's amazing, so good for you! I hope today lets you get outside for your exercise, at least if the weather is any good.
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Carol- i cannot wait to hear how your bike is with a longer stem. I hope it works out! It snowed here yesterday, so hurray for skiing! But my women's biking group begins next month, so that is good too. Fortunately our ski area is open until May 28, so I am looking forward to atleast a few more days on the mountain....weeehaaaa!
Kira- thank you!
My onc followup is today... Next month will be 7 years.... So always a little nervous.0 -
Nordy, best wishes for your testing today!
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What a beautiful day! MLD this morning, wearing tank, sleeve and glove, and just changed into walking clothes. I am going to check how far I am walking in the hilly neighborhood, but my goal for now is to walk for at least 45 min to an hour. MLD or Lebed after.
Does anyone have a recommendation on what to look for with a pedometer? Is there something that combines with a stopwatch? Going to the sporting store later to get one and check out UA tops.
Washed out half of my stash of tanks, sleeves and gloves and they are hanging. I need to pick up mesh laundry bags for washing bandages, etc. So, today is all about exercise, self care, and organizing system to keep my tool box in top form!0 -
And where pedometers are concerned, could y'all make some suggestions about how many steps a day you're aiming for? I have no clue how many is a lot.
Tina, Becky mentioned she got her Omron at Walmart. Becky, which one do you use?
I'm sulking over a flare in front of my left axilla, where I've never one before. It's better today after MLD and a Flexi session and being careful. But being careful makes me very grumpy!
Binney, taking it easy
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