Kicking LEs butt!! Exercise & Self Care Log
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mcgis, Yes I baby my hand. I carry bandaids/polysporin creme and act promptlyThis includes hangnails and cracked thumbs.
Antibiotics on trips to just incase of cellulitis tip off.
I wear long sleeve shirts gardening to avoid scratches and ripped out the roses because they just caused to much pricking and they got blackspot real bad anyway.(love roses though) I try to check my whole affected quadrant every few days though for scratches, sometimes I forget. We are all human here! ha ha.
If I have an itch I try not to scratch, maybe just rub it to relieve the itching sensation. I absolutely never scratch a bite unless I do it in my sleep:( It heals way faster and doesn't spread the poison that way.)
I handle raw meat with throw away gloves which are my new best friend.No more gooey meaty hands. I got the idea from one of the girls here that stopped getting cellulitis once she started using gloves.
But.... I am so clumsy that I pinch my fingers, scrape knuckles and bang hands into furniture when I hurry around the house. I try not to but as I said we are human and ...we gotta live!
Proud. I have learned how to fall on my LE side. So far so good but things do happen!
Just did 10 minutes stretching. Feel so much better.
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Well, I'm home from my exchange surgery. The surgery was at 7:30, and I was home by 11:30. Amazing!
I did end up wearing my sleeve and gauntlet for surgery. After hearing everything here from people who "weren't being heard" in the hospital re: LE care, I was a little worried. But, the nurses and doctors all noticed mysleeve, knew what it was, and without asking, gave me a loose sleeve over the top with huge letters "NO BP's NO IV STICKS". I felt very protected, and I really appreciated that.
I still have the sleeve/gauntlet on 8 hours later....I am afraid to take it off! I am hoping it isn't worse, and thinking I might as well do what I can for it. I can't really massage today, can't hold my arm above my head, etc. I have been sleeping in a recliner most of the day, so I hope it's OK that my compression garments are still on! I am also staying very hydrated. I woke up feeling like I had a mouth full of cotton, and that feeling is still there to some extent (along with sore throat), which actually helps remind me to drink, drink, drink!!!
I am having a fair amount of pain today...both across my chest and on my sides where they did liposuction to even things out. Again....staying on top of oxycodone and Tylenol.
Hoping for no infection, less pain, and quick healing! Although this is no walk in the park, it is SO different than last time. I can move, breathe, and I feel like the medication actually helps....unlike last time! So glad to have this step behind me!
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mnmbeck, hooooooray! One more surgery behind you, and with luck, the last of it. I hope Binney will come by and give some thoughts on wearing the sleeve when you're sleeping. It's one thing for a quick doze, but I wonder about wearing it when you're in a deep, pain-med-induced sleep.
As to your earlier question about babying the arm, yup...I think we all do, kinda. I am much more consistent about wearing gloves when gardening and slathering on the lotion to prevent dry cuticles and the like, than I ever was before LE. You should see my anti-mosquito getup when we're camping in summer--a full screen jacket including a hood that covers my head and face, and hand protection. I hate to put on layers of bug repellent, so I go the physical barrier route, and it must be funny to see. A few times I have cut or scratched myself despite all my care, and I have so far (knock wood) not had any infection afterward, but wow do I notice how much longer it takes even small wounds to heal. That's always a reminder to pay attention and take care to prevent as much as I can. Even so, I do: garden, camp, kayak, swim--and of course wash dishes, including knives, and cook over a hot stove and oven. So I'm taking the risks, and most of us are, just being aware of taking whatever simple precautions we can without obsessing over it.
Hydrate on, mnmbeck. Lift a glass of water in celebration of the wonderful response you got to your LE needs, and to having the exchange behind you. I'm sure we'll all tilt our glasses of H2O to join you in marking this great milestone! Heck, I'll make my glass really special: sparkling water!
Carol
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Thank you, Carol! I am now "double fisted" drinking....a huge thing of water, and a big glass of decaf green tea :-) . I am thinking I must have been pretty dehydrated, because, after all of the water I'm drinking, I'm not really peeing that much. I must need the fluid!
I just had to say that it is so funny that you mentioned your "mosquito garb".....I just bought a mesh jacket thing for mosquitoes!!! No need for anything like that in MN right now, but I know they are coming!!!!
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mnm, at least the mosquito garb scrunches to nothing and weighs nothing, so I never have any second thoughts about taking it with me on river camping trips. Now, if only I had the nerve to wear it at oh...outdoor concerts!
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Binney, thank you for the instructions. Can't wait to stop at the produce store on the way home tomorrow!
Swelling is going down as I do the massage. It's pretty easy to do so I am able to do it more often. I was put on the diuretics several months before the blood clot but I actually don't take them very often for a variety of reasons. ( I forget. I have 14 other pills to take today. Can't keep running to the bathroom at work so can't drink the required water, etc., etc., etc.,). I've been pretty faithful doing the Lebed exercises. Mostly upper body and breathing which my PT says is the very best for us to do. Lots of oxygen! I'll work up to the rest of it as I go along.
Sue
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30 min walk and lebed opening. go girls!
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Well, surgery was over about 38 hours ago, and my LE has not gotten better or worse. I am taking this as a good sign? Especially because I had a lot of liposuction done for "mudflaps", and I am very, very bruised....and feeling like I was beaten by a baseball bat!! Hopefully, it won't get worse! Actually, although my measurements are the same (I measure my arm all the time), I haven't felt any tingling, heaviness or pain in that arm, which is very reassuring!!!
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Mnmbeck. Glad surgery went well. Bruising is part of the process. Praying healing goes smoothly.
I decided the heck with the nerve pain and had DH take me for a drive. Ended up at a beautiful trail head. Pictures will be coming. New goal: make it to the top of Falls Creek trail. 1300 Ft. Climb for .9 miles. Not the right shoes and walking stick today, but got a bit of the way before turning back.
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Gma, glad you had a nice day out!
you deserve the Vit D and sunshine
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Gma, it just occurred to me. You live in the mountains don't you? Is the altitude a factor with your lymphedema?
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Altitude doesn't help. But I think alot worse is the weather changes. Cold one day and warm the next. The swell in the breast causes the nerve pain there to get worse.
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Yikes, this thread moves fast--I'm way behind again. mnm, so glad you're past that hurdle, and hope you're resting well and healing. Too late to be of any help on the question of sleeping in your day garments, but for future reference, if you're sleeping in a recliner you're unlikely to flop around much, so that's maybe better than sleeping in day garments on a regular basis. As soon as possible after surgery you can remove the garments and elevate your arm on pillows. How's the bruising and pain? Pain encourages swelling, so stay ahead of it with the pain meds. And do keep up with the water.
Sue, good for you for keeping up with the Lebed! Really does help me, but it's still hard to fit into every day. Sigh!
Be well!
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LOTS of bruising....and of course, pain. Right now, it all seems to blend together a bit, but if I have to separate it out, I would say the majority of the pain is coming from where they did liposuction. If you are on the picture board, I posted pictures last night. You can see some of the bruising. I have not been taking narcotics today....mainly because I am sitting in my recliner, and using ice packs under my arms for the bruising and swelling. So far, LE is not worse. I actually took my garments off a couple of hours ago because I realized that my hand had less swelling the last 2 mornings than it usually does in the morning. It should be the opposite. When I am in my bed, I prop my arm up to facilitate drainage. On the recliner, it's impossible to keep my elbow/hand above my heart. And, I don't wear garments to sleep in the recliner at night. I do put my arm on a pillow on my lap, but it's not really elevated. Drinking LOTS of water, and planning to take narcs again pretty soon....I might have tried too soon to cut myself off. Still, there is a part of me that is proud that I have gone 12 hours since my last dose (not 4, as prescribed). :-) Silly, I know!!
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The map
The Crevice trail
The creek going up the trail. A couple more times practicing then there will be the falls.
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Gma Foley....how beautiful!!! Thank you for posting pictures! I would think it would be very therapeutic to be there!!!
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Okay, enough of the snow in March. I am off to Florida for a week with my sister, and later in the week, my brother as well. Lots of beach walking to look forward to. See you all in a week.
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mm, I am with you, when given heavy pain meds, I monitor myself to get off or reduce as soon as reasonable. You know your own body. I had foot surgery a couple of years ago. They gave me a bottle of pills and said no refills. I was told every 4 hours but started to wean myself off and by going onto old tylonel after a couple of days. Surgeon was fine with that for me so do check with your docs
glad you seem to be doing better~~
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Carol, do you wear sleeves and gloves while kayaking? Do you just switch them out for dry ones when you're all done?
And how many steps are there in the Lebed opening?
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Oh dear, it's been forever since any of us posted here. Mcgis, sorry I missed your question. I think I saw it while traveling and wanted to wait til I wouldn't be typing the answer on my phone, and then forgot. I do wear my sleeve and gauntlet on my LE arm while kayaking. They don't often get wet because most of our paddling avoids anything resembling white water. When it's stinkin' hot, I will dunk my arm in the water to cool it off. It's not a good idea to stay in a wet sleeve very long, because we want to avoid softening the skin which would make it susceptible to bacteria creeping in through tiny scratches, I suppose. But overheating is not good either. So I dunk or splash my sleeve to get some evaporative cooling, and when I do this, it's so hot that the sleeve dries pretty quick in any case.
I don't know how many steps there are in the lebed opening, but not many! Mostly it's a routine of slow arm movements, reaching up, reaching out, etc. It's done mostly standing in place, or you can sit.
On the exercise front, nothing but frustration to report here. I'm still nursing my knee, doing gentle PT exercises to strengthen surrounding muscles that are quite easy, because I was already strong from lifting weights, but I do think they're helping. Mostly the bursitis and baker's cyst seem to be responding to relative inactivity. Whenever I try to do some cardio --PT recommends an elliptical or a stationary bike--my knee and leg swell again, grrrr. So now I'm working on rebuilding ability to do cardio activity by doing it in tiny increments. I'm up to 20 minutes on the elliptical, somewhat slowly and with no resistance. Long walks are verboten still, because they make my knee ache and swell.
I have kept up my upper body strength training, but I've had so much travel lately for work, vacation, and to care for my elderly parents that I'm not in the gym as regularly as I should be. So to honor my LE arm, that means (following the PAL Protocol for weight training with LE) that I'm backing off the weight and reps. Grrrr again! I guess the good news is that I haven't stopped altogether, but hmmm...I don't have the nerve to get on the scale, but I'm pretty sure of what I would see if I did. (Probably doesn't help matters that the vacation was six days of artisan bread-baking school, and even though four of those days focused on making spectacular and healthy whole-grain products, eating some of every loaf added up to a whole lot of yummy calories!)
So, what is everyone else doing to exercise? We need to keep this thread on page 1, so it's always in our faces to remind us to move!
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Carol, was wondering where you were...glad you are back here. Sorry the knee is still complaining and hope you can slowly get it back where you want it to be. I have had some bad periods where I could not work out but know you will get back into it.
Still doing my gym with a combo of stuff. My gym has a great pool and I recently started walking in the lanes to help my balance issues. Not easy but it is helping. Interesting as another woman who has seen me in my lap swimming, she has signed up for swim lessens and told the trainer she wants to swim like me! Not that I am great but sort of slow and steady. She is 66 and just wanted to add it to her aqua, spin and other stuff!
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Caril, sorry for your troubles. Hope it resolves soon.
I have been enjoying the LiveStrong course at the Y. The only thing I didn't like much was the spin class. We were on more upright, stationary bikes but it is still hard not to put too much pressure on the arms by leaning on the handlebars. One gal had a swollen hand the next day. The seats were too hard, too! We did a water exercise class which was fun. Now I go on my own and run laps in the pool, throwing in some lunges and jumping jacks. I also sit on a couple "noodles" and bicycle my way across the pool, which I'm sure engages the core a lot for balance. It's fun. I'll be sad when the class ends early May.
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Jeannie, I went to a Livestrong session, nice but I already was a member at a dif gym so do not continue it.
You might check and see if you can reup with the program, the one I went to had repeat folks there that all knew each other
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i have not been here in awhile, either. I had my exchange surgery 11 days ago and so have not been doing much since...although I have started walking again. My surgical recovey lined up nicely with changing weather in MN. It is almost impossible not to be outside on these gorgeous days! I was very worried that my LE would get worse with the exchange surgery. I was especially worried about not being able to elevate my arm at night. My hand gets swollen without elevation. Now I am in a recliner with my hand on a pillow in front of me all night...definitely not elevated. But my hand has actually seemed a little better in the mornings, not worse. It seems to be responding more to the inactivity than the elevation, and I am so grateful! I have gone on a 2+ mile each yesterday and the day before. So far so good...I am wearing sleeve/gauntlet so I cant see if there is swelling, but I usually have aching. I am not having that, so I am thankful. Definitely keeping my arm pumping as much as possible and doing fist pumps though. I have gained 17 pounds since diagnosis and it is devastating to me. It is SO hard for me to lose weight. I need hard cardio and heavy weights. to lose......neither of which I know if I can do again. And, weight gain is not god for LE. Gota get on a smart food plan with very few calories...difficult when people are dropping off casseroles and cookies!!
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I had a great week in Florida with my sister and brother. Many long walks on the Cape Canaveral beach for sunrise and on the river's edge for sunsets, and then traveled to Orlando for some coaster riding at Universal Park (I would highly recommend the Hulk and the indoor Harry Potter rides) and more walks at Downtown Disney, Celebration, and Leu Gardens. After a very long and snowy winter here, it was a welcome change to do 80 degree weather and sunshine all week. The great part is all the walking we got in, as well as swimming. I dragged my LymphPress machine along as "carry on" luggage and used my sleeve faithfully with only a little more swelling than usual with the heat and humidity. I came home in time to see the daffodils starting to unfold. Happy Spring to all!
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Laural, I'm in Orlando all week, but for work not play (boo). Even so, I definitely got a weather upgrade compared to home in Michigan, so I'm happy enough about that. I'll be walking a teeny bit, in small doses and not too fast, each evening, just to bask in the warmth!
mnmbeck, don't give up on the idea of returning to hardcore cardio and heavy weights! It's true that some women in our LE group here have struggled continuously to exercise pretty hard without triggering LE flares, but many of us have managed to start over, start small, and build from there. Before I found myself nursing a stupid injured knee, I was working out more and harder than in many, many years prior to my diagnosis, including lifting some pretty heavy weights. When you're ready and have PS permission to re-enter the exercise world, by all means post 'ready' here, and we'll gather all the resource links in one post for you. With luck, you'll find you can return to your former level of activity. And if the LE business rears its ugly head, well...you'll have lots of support here, with suggestions for outsmarting it.
Carol
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Carol....thank you for your encouragement. You are always there with so much knowledge and experience. I wish none of us had to be here, but since we are.....I just want to thank you for the gift of "hope." Feeling a little down and teary lately....I'm told that is completely common at this stage of the game. Feeling like I can't work out is another reason to feel melancholy. I have never been one to have to hold back on hard work. I was starting light workouts before exchange surgery....2-3 pound weights. I KNOW that I need to do that, but it's so hard when I was working out with 25-30 pound weights before! Seems almost like a waste of time to bother with something so small.
I have to keep looking to the future with hope. Please keep posting about your wonderful kayaking journeys....I really do love to read about them when I'm feeling down. I will be fine....as we all will. Just so nice to share and hear stories of a full life, not full of discomfort and restrictions. Thank you for that!!!
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Proud, I can do the Livestrong multiple times but it's not offered again until fall. I am enjoying doing things beyond that class as well.
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Ok all, I am here but don't have much to report. I have started walking 30 mins a few times a week but only on flat ground because when I try to do more I start to get shin splints. Since I had that horrific cold/flu my muscles have gone to mush so I am back to square one. ........Square one is better than no square at all
Laural. That is such a pretty seaside pic and that would certainly be worth walking!
Carol, I hear u about the activity slowing down, My 7 pounds I lost found 2 back. Just too much time on my back and not moving. It's like a vacuum cleaner sucked the energy out of me still. I am better but not totally up to par. I do miss my walks and will continue. I would like to be able to get back up to an hour soon. It helps me with keeping a couple pounds off.
Isn't that bakers and bursitis a stinker? It's nice though that your able to do some activity. I suppose ice is your best friend.
mnmbeck, it is nice to hear from you. Sounds like you are just like the rest of us, we want to dive into exercise like we have done before but some restrictions are hindering us. Still if we are not careful we can do damage and over stress our bodies, so yes we have to be turtles for a while but we will all improve slowly. I am not giving up on exercise because it is so good for mental and physical stimulation.Keep it up when you can even if it is stupid light pound weights! Walking is great when you can.
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Thanks for the reply, Carol.
I'm still SO WORRIED about a flare up when working out that I haven't really done anything yet. My insurance is sleeping on the whole authorization thing for a custom glove so I'm still wearing my Juzo. I guess I just have to get out there and start doing stuff. I think I'll end up doing more water aerobics than anything since it gets super hot here in the summer and my daughter will not want to wake up early and go on walks with me (can't leave her at home) in the mornings.
My right hand is still not the same size as my left. Do your arms and hands look the same? My LE has been diagnosed as mild so I'm sure some of it is just that I notice it and I know I have it. Perhaps others don't notice it unless it's pointed out to them.
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