GRRRRRRRRR I HATE LE..........
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Binney - good to see you are still here! These boards helped me through some tough times, so I came back. I will check out the article, although I visit that site regularly. AND - I have the Lebed video, a pneumatic machine, and I am well versed in MLD. I have the tools, the the emotions!
Even thought about counseling but just not sure if a healthy can understand. I've been trauma, cancer, care giver to my parents, loss of my best friend, been to 11+ funerals in 3 years so I'm good at that! I always find more support from people who have lived the life, not someone who read a book. Okay - I did seek help while caregiving and it was helpful.
Heading over to the website now!
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Ohio4me- I'm still relatively a newbie. Diagnosed April 2017 and I'm managing quiet well if I don't do anything!!! I have had cellulitis 3 times in a year. One from decorating my Christmas tree. I got stuck by a wire hanging an ornament. I was being careful to! Next cut my finger on the winow switch of my DH turbo car and this last round got stung twice while in the pool...exercising because it's good for me and my LE! I love that you named your arm! In my case I need to name my boob! That's were the LE hits me the worst. I get the "FOREVER" thing to. I said something to my DH about this "shit" was forever and he said no its not. Bless him. Hopefully he is right! After spending over $400 to pay my last round of cellulitis bills yesterday I was definitely on the whine train! It made me start thinking about how I feel "disabled"! There's so much I can do physically I'm strong and only 53. It just made me mad last night when I really thought about it. I recently lost 16 pounds. I just quit carbs, sugars and red meats. I eat alot of cottage cheese ( but that might stop after watching Dr. Pimple Popper last night. ..GROSS!! I could have changed the channel but noooo I was sucked in) lots of fresh fruit and vegetables. I will have a hamburger maybe once a month. I also have 6 grandchildren who keep me hopping! Can we draw disability due to LE? ?? We should be able to!
Joanne - virtual (((((hugs))))) coming your way along with good ~~~~vibes~~~~~
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Vargadoll - I have escaped any 'trauma' with Little Martha. I just spoke with my niece (35), she is 2 years out and has LE in her boob. We whined and commiserated together. We decided we are each others support group cuz only LE people really understand LE.
I sure like the 16 pounds! Not sure about giving up carbs and red meat. I'm a farmgirl, gotta have red meat. We had steak with 7 kids at the table! If a cow quit producing mild, she ended up on the table. Didn't have much chicken, that was a treat. I'm gonna try to cut carbs and eat leaner meat. I do like chicken, hamburgers I can pass up, but gotta have a steak - but that can be weekly or less.
I really slack off on LE care - I need to be diligent. That will be another goal!
Love the P31 verse.
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I have not been diagnosed with LE, but I am currently trying to kick a bout of cellulitis in left foob and from what I gather on this board, having cellulitis increases the chances of getting LE later. Is that accurate? A friend who is a lymphedema specialist urged me to wear a compression sleeve when I lift weights, which is several times a week. Haven't decided if I should wear one when playing tennis or running. Any advice on this? Am I smart to wear a sleeve just in case or is it overkill? And does having cellulitis once make you susceptible to getting it again? I am a teacher and a trail runner, so I am surrounded by germs ALL.THE.TIME.
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Hello, ReadyAbout, and welcome!
There is research that supports the fact that cellulitis is one factor that increases your risk of LE. And on the other hand, cellulitis can itself be an indication of subclinical LE that already exists in the area (and increased your risk of cellulitis in the first place.) Goes in both directions, unfortunately. Once the infection clears, it'd be good sense to make an appointment with your LE-specialist-friend (or someone she recommends) for an evaluation and to learn a gentle self-massage (Manual Lymph Drainage) that can help you prevent any repeats. If she does suspect breast LE is involved, she can also help you find a suitable bra to provide compression.
Arm compression during exercise is one good help with reducing LE risk, but ONLY if the fit is good. Have your friend or a well-trained LE therapist check that out, then use the sleeve for exercise, heavy work (gardening, vacuuming, pitching hay bales, etc.) and travel. More risk-reduction tips here:
http://www.stepup-speakout.org/riskreduction_for_l...
And information about breast LE (also called truncal LE) here:
http://www.stepup-speakout.org/breast_chest_trunck...
Hope you never have to join our Swell sisterhood! Hugs,
Binney0 -
Swell sisterhood ♡♡♡♡
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New bra...I love it! Walking out the door. I'll let you know if I feel the same way when I get home.
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The bra looks great. Is it pocketed?
Jo... Yes, my swelling can move like you are describing. I just use my hands to pump my nodes in my neck very gently. Seems to take care of it.
FYI... I'm sending you positive vibes everyday! I don't post much since I don't have a lot to add, but I look for your posts everyday. Your arm sure looks better to me and I'm hoping you get connected with the right doc soon!
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I went to a new lymphedema physical therapist this week. I'm not having any big changes, or major issues, but my old therapist retired and I decided I should get in to see a new person so we were familiar with each other if I did have an issue. It was nice to see somebody with fresh perspective on my body.
Sometimes I feel like finding a medical professional is like dating. Part of its personality and connection, mixed with just the right amount of of experience fast and current knowledge So I guess I can say our first date went well, and we'll see each other again.
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Hello everyone! I am so thankful to have found this thread.
I've recently returned home from a series of long flights to care for my aging mother. This last trip, I was in the air for nearly 12 hours (flights were redirected to numerous other airports due to weather issues). I ended up with Stage 1 lymphedema. I've seen my surgeon and started working with an LE specialist. Unfortunately, she's left town for vacation for 10 days.
I was fitted for a compression sleeve, but it just seems to push fluid from one body part to another. The nighttime garment leaves marks in my arm. That can't be good, can it? I do not feel like I am reducing at all.
Joanne, I've been following your posts. Please know that I am thinking of you and praying for you a lot. You have been through so much.
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Hi, HersheyKiss (delicious screen name!),
It sounds like you've been through a wringer lately--I'm so sorry! If you've already seen a well-trained lymphedema therapist, you know that compression garments are only one part of caring for this new vexation. Have you learned the gentle "massage" technique (called Manual Lymph Drainage, or MLD) that helps clear the fluid from your arm? If so, finding a time each day to do that would be a help in keeping this under control. You also didn't say whether your therapist was wrapping your arm with layered bandages?
I'm not clear on what's happening with the compression sleeve pushing fluid to other areas. If it's pushing fluid to your hand or fingers DON'T WEAR IT AGAIN UNTIL YOU CAN BE SEEN BY YOUR THERAPIST. You don't want lymphedema in your hand if you can avoid it.
The night garments work differently than day garments to control swelling. If they're fitted well and working as you sleep, you will see marks on your arm when you wake up. They indicate the direction of flow that the sleeve is designed to create. What you DON'T want from a night garment is pain, so if it's rubbing at the wrist or elbow and causing you discomfort, redness or pain, that's something you need to take up with your therapist.
Believe it or not, this actually gets easier with time! Hang in there!
Binney0 -
Hi Binney, and thank you so much for your response!
I was never bandaged (the surgeon and LE specialist both felt it was overkill). I have not learned MLD. Is this something the LE specialist would teach me?
The sleeve seems to push fluid to my wrist from the arm. The wrist feels full and "stuck" when this happens. The nighttime garment rubs the inside of my elbow, and yes, the skin becomes irritated.
Thanks again for your words of encouragement. They are greatly appreciated.
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Good morning, HerheyKiss,
Learning MLD is one of those "tools" you'll definitely want to have in your LE toolbox. With any chronic condition, knowing how to do self-care is the way you take your life back into your own hands. Yes, your therapist is the one to teach you. Wrapping is another skill (steep learning curve, but doable!) that's a huge help when there are flares or the need to prevent them, so talk to your therapist next time you see her/him about having the skills you need to manage this crummy condition.
Until you can see your therapist, best to avoid the sleeve that's pushing fluid into your wrist. Sounds like either the fit is wrong or you need a glove or gauntlet (fingerless glove) to avoid further LE spread. As for the elbow irritation, try dumping some cornstarch into the toe of a clean cotton sock, tie off the top with a rubber band, and use that to dab cornstarch onto the elbow area before putting on your night sleeve.
Gentle hugs,
Binney0 -
Joanne, that sounds like progress! Onward!
But, waiting? ROTS!!!
Hang in there, and keep us posted,
Binney0 -
Oh no Jo - no chocolate? It's terrible that you have to wait another two weeks, but glad that the test is finally scheduled.
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Joanne - slow progress is still progress no matter how dang slow it is! Maybe a cancelation will come up and you will get a call to come in earlier?..if you can't have chocolate how about peanut butter! That's my favorite! I have a supervision this morning will check back in this evening.
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Jo - I had a bite of some kind on my leg some years ago before I had LE. Red, swollen, throbbing... I ended up in the hospital for a week on IV antibiotics. Probably not relevant, but it worked.
If some of your docs are thinking cancer, why haven't they ordered a PET/CT? This nuclear test will show up any hot spots of increased cellular activity in the body. I know lots of docs don't like to order them because patients can get frightened, and if I understand correctly, there is a higher percentage of false positive than some of the other tests. But that's how they confirmed my recurrent cancer.
Wish I had some better ideas for you.
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Jo - whine away. Of anyone you know WE understand the pain & the frustration.
For those of you who want to attempt more exercise, Hugz has issued a 5/2 challenge on the LE exercise thread. Check it out.
https://community.breastcancer.org/forum/64/topics...
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Oh, Joanne, good on you for knowing to stop and back off.
And for what it's worth, it doesn't sound like whining to me--or likely to anybody else here either. This is a safe place for sounding off about the frustrations and the challenges. Just know we're all rooting for you. Wish we all lived close enough for hugs!
Binney0 -
if you are near Canton, I have two therapists I go to when needed. One is more for myofascial stuff related more to radiation. The other was trained, cuz her mother had LE, but never tested. She was very helpful and gives reduced rates if you schedule multiple appointments. I learned technique from her. My first therapist was in Barberton and was excellent, she moved to California.
PM me if you are local and I will give you names and numbers.
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Jo... Please keep sharing here. It's the perfect place to share frustration, fear, and worry... It's also a great place to share good news and I hope you have some great news to share soon! 🌻
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Jo been following your story off and on. Dang le anyway. Glad you have turned a corner even if a little one.
Edited to correct:Best probiotic I found was VSL#3. 450 billion bacteria per sachet! Wow!I think Costco has it behind counter in capsule form. Not cheap that's for sure. I ordered online. So strong my Gastro doc said take 1/6 of package and increase to tolerance.
Some of my friends take their probiotics after they are all done antibiotics to ensure they will be effective and the website of VSL says to do this. I use to take probiotics 2 hours before or after antibiotics but just went into VSL website and will be revamping my administration of probiotics.
Edited. Oh no JO I just read you July 28post on lebeds. I thought you were doing a bit better? Must sit with coffee and read your last few posts. I've been vaca and need to catch up.Ugh dang le
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Awe Jo and it’s summer to. Seems like my summer always gets screwed up to.
This June a scratched cornea from a eyelash that grew into eye. Still medicating it as it turned into an ulcer. At eye doc office right now getting it looked at, no bellinis here just office full of staring eyeballs!
Yup that eyelash was from chemo eaons ago which caused some of my lashes to grow towards eye. Still bugs me once in a while. Going sept to get lash cauterized off.
I wonder if the tai chi exercise breather would do you harm. I’ll bump it and you can read about it. It’s the one they used in a study and it moved le fluid.
I’ll look up floragen. Thx.
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Jo bumped it up. Yup dry eyes suck. Have had for 30 years. No fun but would gladly have instead of dang le
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Jo itson the “easy tai chi breather exercise to move lymph fluid out thread." It's there. Posted yesterday. Let me know if you can't find and I'll bump again. It's right under grrr thread.
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JO dang anyway. If you can belly breath and bend over forward while breathing out I think this expells air better maybe puts pressure on diaphragm. This is in theory, I’m not sure but I do this. Maybe we will have professional breathers drop in and tell us.
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One of the exercises we do in water aerobics is hold a medium play ball to our rib cage. Breath out and contract the abs to bend forward. Obviously ball moves down the core. Straighten & breathe in. It's a lovely cleansing feeling. Could easily be done anywhere.
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Jo - Yes, I remember about the skin graft. I know you'll miss the pool. I find the exercises much easier in the water. Hopefully you can find a friend to use your sessions.
How is your arm doing? I can't remember - don't you have an MRI scheduled next? What is that date?
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Joanne - still think of you daily!
I have a sore spot below my LE boob. It's right were my bra band would be. It doesn't hurt I just know it's there. Should I be concerned? I think I feel a lump or something. I don't trust my evaluations anymore...I always assume the worst case scenario now!
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thanks Joanne! My husband said he felt like it was from the band on my bra. I haven't worn an underwire since the day of surgery. I had my new bra on the one that I love the lymph o fit one the day before I noticed the sore spot. I see my PT on the 15th. I go for a colonoscopy on Tuesday. I want the colonoscopy done and over! I've had two before so I know what to expect.
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