Kicking LEs butt!! Exercise & Self Care Log
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Have another appt with dermatologist tomorrow. Rash is not gone and seems to be marching on. Arm and hand are not happy with no compression, no vest either. I guess they will do biopsy to determine what this MF rash is. I am not in a happy place, arm and hand hurting and the rainy/cloudy weather this morning didn't help. Can I just get in a routine, PLEASE!! Gynecologist appt this morning, which takes me to the anxiety/cancer phobia place. Lawyer appt tonight re Mom's contracts, etc, and I am wiped. Had to do some banking this morning. I want to curl up on the sofa with a blanket. I am pooped from having company even though it was fun. Nothing by itself is traumatizing; it's just the full catastrophe. I could use some good vibes!
Keep on keeping on, ladies!
Hugs, Tina
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Awwww, Tina...sending huge hugs and positive vibes from over here! And chocolate, the universal antidote to drama and trauma. The frustration in your voice is so clear. I hope you do curl up on the sofa with a blanket, because in truth the best cure for being pooped is indeed to get some rest. It's great to hear you had fun with your company, now you just need to get back into some kind of a routine that gives you more time to take care of yourself.
Carol
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Ah Carol--You sound as if you are into torture! The fry out of my reach! But if I tried to eat one as I pump on the elliptical I would probably choke to death!
Hugz-The support group I went to was an LE support group. We started one in January and have been having great meetings. I always feel so much better after attending.
Tina--Wish I could actually pour some good vibes your way. Hang in there. Let us know if we can do anything.
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I don't know anything about the Lebed DVD...can someone fill me in? I have been dealing with LE since December and no one has mentioned this to me.
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Ginger, the LeBed DVD shows a gentle but effective stretching and exercise routine that is designed to help move lymph. You can read about it and see a sample here: http://www.gohealthysteps.com/ Some of us find it to be corny, and for me only the opening segment is interesting, but it's certainly worth investigating. If you search Lebed in youtube, you can find a few of the segments there, and I think some women just bookmark those and play / follow them instead of buying the DVD.
Let us know what you think!
Carol
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Today I was a real desk slug. I had a good bit of work to do, and apparently I do not have Becky's amazing discipline to get up and work like mad on a cardio machine every half hour! Becky, I am in awe. I did eat three or four squares of dark chocolate and started my day with MLD. Those two activities alone should earn me a star on my forehead. Now BECKY's forehead star is neon and sparkles in the sun...I just earned the plain one today. Well, maybe in truth I did not earn any star. I'll be more ambitious tomorrow.
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Becky, eager for a report on the support group. Bet everybody there felt great afterward -- soooo important to know you're not alone with the stupid LE! And so important to get good information too. Brava!
Galsal, does your therapist wrap chests? Have you tried a breast binder for night use? I have a Solaris vest, which is already going into the refrigerator during the day, since the temps here are climbing--makes a lovely cooling vest, at least for a few hours into the night.
Be well!
Binney0 -
I woke up with more arm soreness than usual. Well actually, I almost never wake up with it! Makes me wonder if yesterday's marathon at my keyboard for work is the culprit. I work standing up and I do move around a lot, but it's not exercise by any stretch. Becky, I think I need to consider your method of doing mini, all-out exercise breaks. Maybe I've said that before, only now I really should do it!
Anyway, today I did a 30-minute very hard cardio walk on a treadmill, and then an hour of lifting weights, balance and flexibility work. So I'm tuckered out, but happily so. I did morning MLD and will do it again later tonight. I think I'll do some ball-bouncing, too.
Carol
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A quick check in. Well I was kinda lazy to walk yesterday but I did get in 9 hours of back breaking gardening instead and today 3 hours too. I looked up the calorie burn and it is something like 250 an hour for my weight so I am happy.
Today I also made a sound decision and instead of sitting at the doc's office waiting for my kid to finish her appointmernt I abandoned her for a walk in lovely downtown Vancouver, It was so nice. A cruise ship from Holland was disembarking so as I walked I watched it. Climate was perfect for walking.
Will have to do the dreaded staircase at work tomorrow! Not too happy about that but I don't want to lose my lung capacity that I am working on, so off I go!
Tina. I can't believe that Stinkin rash is hanging around.
If it is itchy try a warm bath in ground up oatmeal (blend it). I did this for my kid when she had chicken pox years ago. Even If it doesn't work for you at least you will have soft skin. You are having such a rough time. Come on girl... you'll be Ok and then you can stairclimb and wrap with me.
(gentle hugz)Becky, What did you learn at the LE support group?
I see you sweating as I speak. Oh... I see Nordy sweating even more since we are the only ones to give her permission to sweat!
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We all did the Lebed exercises at our meeting. It was a lot of fun. I took bubbles for us to blow. We spent the rest of the meeting decided the direction we want to take. It is a newly formed group. We just started in January. It is great to have some therapists there.
Yesterday I graded at home all day. For 10 hours I stopped every 30 minutes and did 2 minutes of elliptical as fast as I could. I also did weights which takes me about 20 minutes. I started doing the 1-2 minute breaks because I read a study that if you sit for more than 4 hours a day you are like 40% more likely to die early than those who do not---even if you do an hour of cardio daily. Constant movement is better than all at once--or both is needed. So I am trying to move more during my sitting periods. That 40 minutes wore me out.
I am getting ready to do an hour on treadmill then off to work.
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Becky, Good idea to bring the bubbly even though it wasn't champagne! How did you get the therapists involved?
Good thought abut moving. I stand at my desk at work a bit, but will do more.
It is raining and I don't want to go out walking today. Please kick my butt! I will go be my brakes are on!
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A PS to Becky's note about our support group (called ETLAN for East Tennessee Lymphedema Awareness Network): Copies of letters that could be sent to our Senators seeking co-sponsors for HR2499, a bill introduced in the House of Representatives that would mandate insurance coverage for lymphedema treatment, were also distributed. One thing that we have learned from ETLAN is that there are far too many people (women and men) in our area who have great trouble affording the compression garments and bandages required to keep lymphedema under control.
Talking about insurance was the grim part of the meeting and then, thanks to Becky, we had fun with bubbles and LeBed, which was new to most of the people there including nurses who also attend.
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ahew, Sounds like your group has good ideas. Regarding garments my insurance only covers about 150.00 per year and the government in Canada has nothing for us. If I hear of any crusade for Canadains, I will be seriously considering joining the gang.
Just finished my 45 min walk. It was a odd combination, rain and sun together. Hard to know how to dress for this. I really need rainproof,light,airy, breathable and something not to expensive. Any ideas anyone?
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time for mld and exercise this evening. seems like the swelling i heading towards to back of the low shoulder area. grrrrr plan on wrapping tomorrow instead of wearing the binder
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Hugz, you could start the crusade for Canadians.
There are plenty of them here, and they're universally frustrated. Lymphontario was started by Anna Kennedy, a lympher (or maybe a mom of a lympher--can't remember), and they've made a big difference in Ontario. They haven't been in existence all that long, either. You might want to connect with her and tell her you'd like to know more about how they organized and how you could start organizing in your province:
http://www.lymphontario.ca/Go for it!
Binney0 -
Just an update that LE is somewhat kicking my butt right now. Maybe I should say the stupid rash is kicking my butt and the LE is just joining in for fun! I have been able to wear my glove, as my hand still seems to not have rash at this point. Had tiny areas but they are gone. Dermatologist said that she now thinks that I have dry skin/ezema/dermatitis. I can't believe I did all that laundry for nothing!! Well, maybe detergent isn't totally rinsed out of clothing? She told me the only thing to be concerned about is if dry patch gets yellow crusty top. Ya think? She said with dry skin there can be these little micro cuts . . . yada yada yada . . I said I KNOW! That's why I was concerned about cellulitis! You guys understand how it is. She seems genuinely compassionate about my issue, but has no clue that I understand how this could affect my LE arm and increase potential for infection. Lotion, lotion, lotion, benedryl at night and zyrtec during the day, cortizone cream applied 2Xday. It is getting better but new areas popped up. I really find it hard to believe that I suddenly have developed a skin issue?
Well, I have not been able to wear vest and sleeve, no MLD until rash clears therapist said. I have not wrapped and not wearing tank. In spite of all of this, I was thinking earlier today that I feel pretty good. Tonight my arm is slightly aching, doing the barometer activity for rain tomorrow. I was very busy this past weekend, pretty exhausted by preparing and then hosting. I got a lot of sleep the last two evenings, and tonight I plan to get another heavy dose. This does me a world of good as far as swelling. So, while I haven't been doing a lot of physical activity - not sure running up and down the stairs would be good without sleeve or wrapping. Maybe I could get some walking in tomorrow if it doesn't rain all day? What's the worst that can happen - swelling? Whatever. I am just pleased my body has been behaving fairly well even with all the stress. I am in good spirits but taking a back seat right now with posting here. You know I love you guys! I'll be back on track soon and feel like checking in more.
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Binney, Just scanned the website, Thank you. It looks interesting. I will poke around in there once a get a bit of time. I just need a longer day!
I also just signed up for a BCLA association membership last week and that is British Columbia based. I am hoping they have some ideas too. I think they have been on the block for about 2 years. Just a baby but with more members we might get a crusade going one day.
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Hi all - not sure if I really belong here, but know that you all will guide me. I've had lumpectomy, SNB (2 nodes removed, both neg) and 33 rads which finished 2 months ago. I saw my BS on Monday and told her I am experiencing tightness in my underarm and breast and reduced range of motion in my arm. She sent me for PT which I was all for as I know the good it will do. She figured they would give me some home exercises and send me on my way. Instead they found slight cording (PT had me feel it in the crook of my arm) and slight swelling of my upper arm. So now I am in for 4 weeks of PT. That's fine as I know it will help get full range back in my arm. The question is....since I have cording does that mean I also have lymphedema? I know someone out there will be able to guide me. THANK YOU. Julie
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ahew--You did a marvelous job creating the letter for our Senators. Maybe we should storm them in Nashville, wrap them and leave them wrapped until they say YES! Maybe we should flash mob them! It seems funny to be writing here to someone I see frequently.
I hope to see the day where in our appalachian area that no one has to go without treatment or garments--or anywhere.Hugz--Maybe you can get a partner and start a support group. You don't feel so alone.
I teach a Thurs night grad course. Last night was the final. About 20 minutes in the final the electricity went out--all over most of the county. We could not continue. I just sent them home, told them to finish the exam at home and email to me by Monday! Our room was in a basement with no windows. Anyway afterward I just went for a long walk over the campus to get in more exercise. It is not a totally flat campus so had some inclines.
Since I do not have exams to grade today I am going out to the dam.
Tina--I am so sorry you continue to have the skin problems. I hope you find out the cause soon.
Becky
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Julie, Did the PT say 'lymphedema'? Swelling of upper arm would sure suggest that, so a good course of action might be to find out if the PT is qualified to do an LE evaluation and treatment. I am wwriting this on my phone and cannot drop in a link, so hopefully someone will come by and give the link to 'finding a qualified therapist' on the stepup-speakout.org website. LE therapy is specialized, and PTs or OTs need additional training to provide effective treatment.
Becky and Hugz, a while back I did a web search and found a lot of garment funds, most of them local to cities, counties, states, and a few in Canada. I put my results online in a public Google Docs spreadsheet. Cannot link to that for the weekend as I am traveling, but maybe Binney can drop it in.
I found those resources in a few hours and most should be verified by phone. It would be an enormous but WONDERFUL project if women on these LE threads would call their area hospitals, LE clinics, and their local Komen chapters to find and profile garment and therapy assistance. I found lots of evidence of Komen grants for that, but my local exec director says she has no way to generate a national list. Together, we could build my little list into something very helpful to all.
Tina...all I can say is "chocolate coming your way!"
Carol0 -
Thanks for the chocolate, Carol! I thought about it this morning and decided it wasn't best to stay away. I need to be compliant in the ways I can and make sure I don't get lazy, so here I am.
Checking in to report I did MLD on trunk last night and this morning. Kitten soft and slow. Arms and legs are looking a little better. Working hard to get my arms free of rash so I can be compliant with sleeve, although my arm is feeling fine today. Hand, too. Hand looks just about normal. Drinking tons of water, deep breathing, plenty of sleep last night.
Having visitors last weekend forced me to clear out a lot of clutter. I had been afraid moving this stuff around would trigger flare, but it did not. It has inspired me to keep going and clear out more. Ruthless culling of crap! Wearing glove, of course, and taking frequent breaks.
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Julie, hello!
Cording doesn't mean automatic lymphedema, though it's a heads-up for that now or in the future. But the swelling you mention does need checking out by a fully-qualified lymphedema therapist. Here's the link Carol mentioned for finding one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm
It can be hard to get good information about lymphedema, and even harder to accept any indication that it might be happening to us. Really hoping you'll get an all-clear from the therapist, but please know we're here for you either way.
Gentle hugs,
Binney0 -
Carol, I would love to see the link you made for garment funds when you have time.
I could try and pitch in to make some contacts for a national list or even a USA/CAN list. I need guidance though as to how to go about it, and I am not computer savy. But I can talk up a storm on a phone if that helps!
Did my stairs begrudgingly. Will do my walk in a hour with my poles.
Tina, It is good for you to come to the boards and to consider exercising or moving around a bit. I was in a glitch last week and the girls pulled me out. Come on girl. You can do it! You inspired me to get back stairclimbing, Thank you.
Now that company is gone your life will be a bit normal and once that monster rash hides all will be better. A rash really isn't fun that is for sure. I can't remember where you first got your rash but If you first got it between fingers, behind knees and inner elbows or itchy inside ears or between upper thighs that could be excema. Those are places it usually can start. Think back about maybe some stressful situations over the last few weeks. It may have triggered your rash.
Glad you hand/arm didn't blow up with moving stuff. Good to declutter but take lots of breaks and mix up your tasks so you are not doing one thing repeatedly.
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Thanks for the encouragement, Hugz. I am afraid to get too winded or swing my arms without wearing my sleeve or tank. However, I have been moving around, going up and down the stairs all day. I have done a lot and still feel good. Definitely taking breathers, going easy on repetitive movement. I have shredded tons of paper, and I think my house might float away with that gone! I finally got a big chunk of paperwork done for my mother's finances, which is a big relief. One more big hurdle, then two small ones, and I should be home free.
Mom is being quite testy with the PT's, arguing and refusing to do exercises at times. It is unfortunate, and I was feeling if I were there she might be doing better. My husband reminded me she does what she wants to do, and that certainly is true. She runs a good racket, as my aunt visited yesterday and had her convinced she was up and around and running marathons.
Making train reservations this weekend to visit with her. I will be curious to compare this experience with flying and driving. Will take 24 hrs but we will have small private room. I am going to wear my pedometer and see how much I can walk on train! 0 -
Tina, Good to hear from you. Sounds like you have some pep in your step so that is good. Yuk ....paperwork. Shread, shread shread! I burned out my shreader this tax season.
Your mom sounds like mine. There is no convincing, they do what they want to do even if it is dangerous such as standing on a step stool to dust lights! Did I mention she uses crutches 24/7 but will climb a ladder! Oh brother, Who is looking at the lights anyway when you are over 85!
Hope all goes well and just do what you can to move around even if it is toe tapping!
Got my walk in and I'am done for the day. After my walk I checked where the top of the arm garment sits on my shoulder and there was tiny swelling under the armpit. I wear the over the shoulder juzo with the cross strap and is not suppose to bind but I guess it did. So now lots of deep breathing and fist pumps and will rest my arm on the back of the passenger seat as I drive in a few minutes. I have a tight shaper on to that drives me nuts when I sweat. Oh brother....again!
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Good gravy, Hugz! Your mom doesn't want to let her cleaning routine go, does she. It must be hard to give that up if you're used to doing.
Excellent you completed your walk. I have always wondered how the over the shoulder sleeve with strap feels/fits. There seems to be some sort of tradeoff with these stupid, I mean wonderful, garments. Hope the swelling recedes quickly. I'll have an extra glass of water with you!
I should have worn my pedometer today, as I might have worked in more steps than anticipated. All in all, a very productive day. Not so great exercise-wise, but ridding myself of some stressful tasks and worries will have a positive effect on my LE, too. Getting in bed to do MLD and lotion up, nodding off early again tonight.
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Hey Tina--as long as you are moving--and it sounds as if you are. You do sound so much more positive.
Rain, rain, rain here today. Guess it will be the elliptical plus weights. I did go out to the dam yesterday but it was so hot and humid I only did five miles. I was soaking wet! I did come home and did 3 more miles on the treadmill in 45 minutes. I think my activity will be more indoors for awhile.
My 90 yr old mother lives with me. She is the opposite and does not clean. I have a cleaning lady come in once a month to clean her area of the house. I have an apartment in the basement. She is independent though and is involved in a lot of activities. She would never get up on a ladder! I worry more about her inactivity than activity.
Tina--I may be visiting my sister in Philly at the end of the month. She just moved there in December.
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Gee ladies, maybe we could all meet on some social media site that is dedicated to helping each other deal with elderly parents. I'm having issues with mine, too...who last week bought a car (at a very disadvantageous price) after falling for a phone solicitation that announced they had 'won an IPad.' Never mind the question of what they would do with an IPad (which somehow has not materialized with the car); they fell for this hook, line and sinker from a disreputable car dealer, and not a peep to family until it was a done deal. Sigh...my son-in-law is working on reversing all of this, fortunately, as I'm too many hours away to be of much immediate help.
Anyway, Thursday about zero exercise for me, then Friday got in 3.5 miles walking and today so far about 3 miles. We're out of town for a family wedding; 12 hour drive here which we did in two legs Thursday/Friday, and we'll drive straight home tomorrow, so I'm afraid today's walk (on beautiful Colgate Univ. campus) is about what I'll accomplish for exercise. It is really fun to have new places to walk, that's for sure!
I hope you all are having a good weekend for exercise and LE care!
Carol
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Becky - I thought we'd have to wait until July to meet in TN. If you have time, I would love to meet when you visit your sister in Phila. I am firming up my travel plans for FL this weekend and hope I will be in the area while you are here. I was looking at the weather for K-ville, and it's only a few degrees cooler than where I will be in FL. Sure is hot and steamy, and I can't blame you for heading indoors to do your cardio at this point.
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Oh, Carol, how awful that a dealer took advantage of your parents. I hope your son-in-law is able to remedy this quickly. Sounds like you are getting in your exercise as you can. Exploring new places is a wonderful way to get those miles in - makes the time and distance feel shorter. Have fun this weekend at the wedding and with your family.
We are heading downtown tonight to see the Van Gogh exhibit. Overcast today and probably will rain at some point, but it would be nice to get a walk in while we are there.
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