Jun 15, 2019 07:16AM Vargadoll wrote:
Minus- that's excellent news!!!
Posted on: Mar 8, 2012 08:32AM
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.
Posts 6961 - 6990 (7,040 total)
Jun 15, 2019 07:16AM Vargadoll wrote:
Minus- that's excellent news!!!
Jul 21, 2019 10:36AM ShockedAt48 wrote:
I haven't been active on this thread lately, but I wanted to let you guys know about truncal lymphedema. I started experiencing pain on my rib cage right after I started radiation and questioned my radiation oncologist, but he said it was nothing. The pain seemed to come and go and after a year from my treatment I noticed a definite bulge on the treated side below my bra line on my side. The pain still came and went. It felt like a large bruise, very tender to pressure but nothing agonizing. I went to my oncology check up and asked if this could be lymphedema and she said no, it was just fat. I felt embarrassed and dismissed it but still felt like something was wrong. The area in question seemed to grow in size and the skin was discolored with redness. I went to the nurse practitioner oncologist and showed her and told her I thought it was lymphedema, but she said it was not. Just my body being asymmetrical. I asked if I could have a consultation with a LE therapist and she said no. I then went to my primary care physician and she said there was a tenderness between the lining of my ribs and took X-rays. Luckily nothing showed up on the X-rays. I then had another appoint for my regular checkup with my oncologist and again showed her. She said it was nothing. Perhaps the redness was from an allergic reaction. I said no to her recommendation of Benadryl and other medicines. She looked again and said, "Yeah. I guess I can see what you are talking about. I'll give you a referral to the LE therapist." At last! Well I just had my appointment and the LE therapist said that I most likely have Stage 2 lymphedema! It could possibly be stage 1 but she will have to see how I respond to therapy. Stage 2 does not reduce in size but Stage 1 can possibly. There are 4 stages (0, 1, 2, 3). I am so angry that my doctors did not listen to me for an entire year. I knew there was something wrong but because I am overweight, they did not listen to me and insisted that it was fat. Each time I talked about it I was so embarrassed because they disregarded my concerns and basically told me that I was lopsidedly fat. Time is of the essence to treat lymphedema before it progresses. I could have potentially not been as advanced in my stage of lymphedema if they had listened to me. I just want other women out there to push for their referral if they have similar symptoms. I will be talking to them at my next appointment about the difficulty in diagnosing truncal lymphedema and that they need to listen to their patients. I believe that they are at fault for my advanced stage of lymphedema. It is completely unacceptable to be dismissed. I have my compression garments on order and hopefully things will go down.
Jul 21, 2019 11:33AM Vargadoll wrote:
Shocked- our stories are similar! I'm stage 2 as well...truncal LE also...
Jul 21, 2019 12:26PM MinusTwo wrote:
Shocked - it is such a shame that docs aren't educated about LE. We shouldn't have to, but glad you kept pushing. This link below has several things you can print and take to your docs to help them learn.
Jul 23, 2019 12:00AM hugz4u wrote:
hi all, didn’t meet June challenge but almost. Walked more irregardless. certainly am pumped up for July.
13 hours in Garden yesterday. Had sunshirt on 90 percent of the time but a weird little rash on my le arm developed. Will show mld girl today. Maybe dirt got thru my sleeve and rashed it out. Taking good care of it. Also bashed my finger between concrete landscaping blocks a week ago. It’s coming along fine so far. I’m accident prone for sure
Looks like we have all had stumbling blocks out in front of us. Varga and minus you’ve had tough times. Varga,We had to put down our dog couple weeks ago so I know what your going thru. It’s a heartbreaker. Not sure if I can get a dog again, certainly not ready emotionally. Let’s not let life get in the way of exercise. I know that’s hard to do but it’s so important.
Minus congrats on heart checkup. Way to go!
Varga I have to stretch my rad and surgery scar area every day or I get Charlie horses. I feel my scar does contribute to breast le. Ugh le stinks!
Good job glennie! Your encouragement is helping me! Weights and walk tomorrow as today stiff and sore and exhausted from gardening.
Just going to lay flat out on that mld bed and soak up the mld today. Self care today and Rhuematology results today. Yup osteo arthritis with bone spurs here we come. Have great day. I’ll pop in to see how all are exercising.
Big win for me. Increased my weights for triceps to 8.1/2 pounds last week!!Took me a year to get in that extra pound. Slow and steady wins the race.
Jul 23, 2019 02:31AM Vargadoll wrote:
Hugz- sorry to hear about your dog. We aren't ready for another pet just yet either. I still tear up thinking about our boys..I went to my MLD girl today to! We have so much in common it's like we are soul sisters and BC brought us together. That's awesome on the weight increase...I'm still struggling! I can do 10 pounds easy but I can't! I her cording if I even try to do 5. Maybe I'm moving up to fast or doing to many reps...I have been trying to find a personal trainer that knows about LE.
I have been doing pretty good with my exercise. In the pool almost everyday doing laps. Plus going to the gym at my church and exercising there. It's set up like a curves and has treadmills, a bike and 2 Elliptical.
Have a great day ladies!
Jul 23, 2019 11:21AM MinusTwo wrote:
Hugz - so glad to hear from you. WOW - 13 hours in the garden? We've been at 100 degrees for days so I'm trying NOT to go in the garden. I have no problems with my mastectomy scars, but the scars from the later ALND and rads are just like yours. Have to stretch every day.
Varga - you're way ahead of me. Can I whine that I'm older??? Will that excuse me? Hmmm, not so much.
I go to Chair Yoga on Monday afternoons. Silver Sneakers on Tuesday & Wednesday mornings. And water aerobics on Monday & Wednesday nights. Yes, I know I should be walking on the tread mill in addition, but just can't seem to make it happen. Even with all this activity, only one meal a day and rarely any bread or pasta or potatoes - I can't seem to lose weight this summer. I did lose every past year on this same regime, but.... Sigh.
Aug 31, 2019 01:09PM ShockedAt48 wrote:
I finally received my compression camisole for trunkal LE and it fits slightly snug. This is after the fitter went down a size because the first one was completely loose. How tight should it be? I assumed that it would be very snug like Spanx. Also, my arm sleeve was so stiff and tight and creased at my elbow that they are going to redo it. My arm felt like it was in a cast and had to be bent to be comfortable. If it's sized properly, will it be comfortable?
Sep 3, 2019 10:37AM MinusTwo wrote:
Shocked - my Belisse Compression Camisole is like you described - slightly snug. it is not like Spanx.
Sep 5, 2019 01:23AM PiperKay wrote:
My Belisse Compression Bra (not camisole) was sized at 32 even though my regular bra size is 34 or 36 depending on the brand. It is VERY snug. And I wear a "swell spot" too which makes it even more snug. I would not say that it is comfortable while sleeping, but it seems to be working. The swelling on the right side has been reduced. And I actually like the sleeping sleeve. If I was to wear the compression bra during the day, I'd probably ask for one the next size up for comfort.
Sep 5, 2019 02:40AM flowergal wrote:
The web site lymphedema products.com sells a hook and eye extension piece which i bought as when I was wearing the full breast chip pad, the bra was way too tight. The extension allowed me to increase or decrease the size depending on if I used the swell spot or not. It does have one extra hook and eye which is no big deal for me and was a lot cheaper that buying another belisse.
Sep 5, 2019 09:38AM PiperKay wrote:
Thanks, flowergal. I'll look into that. I may also check back with the LE clinic about ordering a different size since apparently my insurance will pay for it...
Sep 6, 2019 04:41AM flowergal wrote:
Good Luck .I found the belisse really did work very well to reduce swelling along with the swell spot. The only thing I didn't like was wearing it in the hot summer but now I don't really need it except for flare ups or flying.
Sep 9, 2019 01:18PM MinusTwo wrote:
FlowerGal - I've found the same thing. I only use my Bellise for flying or flares. But I do wear a Wear Ease Sydney compression bra 24/7. My LE therapist loved the high back & sleeves. I love the fact that it's easy & looks attractive. The company is woman-owned and they are absolutely fantastic with customer service. They have regular sales on the internet.
Sep 10, 2019 12:30AM Vargadoll wrote:
I use my Bellise for working out and heavy house/yard work. I have a love hate relationship with the damn thing! Love the way it makes me feel hate then way it looks!
The Sydney in the other hand is fabulous! Looking and feeling!
Sep 10, 2019 12:35AM PiperKay wrote:
Here's another bra for those who need some support but not necessarily compression. I just found it while looking for wireless bras. When I showed it to my LE therapist, she thought it was great and recommended it to another client right away. https://trueandco.com/bras/wireless/true-body-v-neck-bra/mink
It's so comfortable, I have three of them now. As you'll see, it comes in many colors and sizes. Very attactive, too, I think.
Sep 10, 2019 01:04AM flowergal wrote:
Thanks for the info PIperKay,
I checked out the link but looks like the bra has to go on over the head. I have a little trouble with this because of an old rotator cuff tear so have to be careful . I tried on the sydney bra at a local shop and it was way too small ( supposedly the correct size) and hard to get on since it doesn't have any hooks or eyes or zipper. I did buy the wearease compression bra which is fairly comfortable and provides some compression and I use it at night. I have some sports bras that I wear on my daily walk but they just aren't quite enough support to wear all day. I do have several bras by Jodee which are very close in style to a normal bra and I wear those a lot.
I do appreciate any info about alternatives .
Hope you all are having a good summer. It's 95 here in Memphis so I am not working in the garden today!
Sep 10, 2019 01:14AM PiperKay wrote:
Yes, the over the head feature can be a little challenging. Once it's on, though, it's wonderful. But no one thing works for everyone. I'm glad you found some that are comfortable for you. I'll check some of those out too.
Here in Atlanta, we're headed for a high of 99. That's much hotter than it's been all summer. Thank goodness for the AC!
Sep 10, 2019 06:11AM Vargadoll wrote:
PiperKay- all my pull over bras...I step in and pull up! So much easier and it gives the girls a little lift!
Sep 10, 2019 08:26AM PiperKay wrote:
Vargadoll, that sounds great but I don't think they'd stretch enough to get them up over my tush!!
Sep 15, 2019 07:51PM Vargadoll wrote:
PiperKay- I have a big ol' booty!! The song Baby Got Back was about me....lol!
Oct 23, 2019 09:34AM hugz4u wrote:
Hi girls. I’m still chugging away although my left hip has flared up for no reason these few past weeks. Thinking it might be worn out with osteo arthritis like all my other joints. This might be a major hiccup but I’ll try adapting cardio on bike and elliptical buttttttt... I’m a walker and it’s my first choice if cardio.
I want you to all put on sneakers and sneak around getting some exercise
Oct 23, 2019 09:43AM MinusTwo wrote:
Hugz - thanks for posting but sorry to hear about the flare in your hip.
I've get a 'twinge' in one knee but I'm trying to ignore it. I haven't been good about making it to Silver Sneakers since my trip to California September 1st.
I took my 39 year old niece with me and we walked, and walked, and walked... and then some more. Up and down hills in San Francisco, Fisherman's Wharf, both the outside & inside labyrinths at Grace Cathedral, Alcatraz and across the Golden Gate Bridge. Then most of a day walking around the Monterey Aquarium then a day with more hills in Carmel. 6 hours at Hearst Castle with WAY more stairs than I could ever imagine. Wharves & Piers in Santa Barbara. More than I've walked in a long time. Now trying to get back to normal every day walking, but my neighborhood & the treadmill look pretty boring.
Oct 29, 2019 11:36AM HollyDollyD wrote:
I'm so sorry you went through this. It drives me insane when drs. don't listen, or nurses, or the medical system in general. When I first got lymphedema 2 weeks ago, I asked for a prescription for a sleeve. They referred me to a center. Because I'm an admin on another survivor group, I knew this place to be terrible. Turns out they had to pay $4.3MM in the Houston offices alone for medicare, medicaid and unlicensed professional fraud. A lawyer friend of mine looked up the place and found all the other outstanding lawsuits. I emailed the nurse back with the information and asked for the prescription and orders, please. And they gave them to me. But still, why couldn't they have the first time? My onco is uber-competent, so I know he's going to be chuckling when I see him. And I hope they flag my file in EPIC with red flags everywhere saying, "Give this patient what she wants. Her research skills are excellent and she'll call you on the mat if you mess up." Ha. Bet they won't.
In the meantime, I have upped my water intake to flush the extra fluid (who knew...) and been walking 15 minutes/day. It's a start.
Finally, shame on the doctors for body-shaming you. Especially when we women are overweight we need support and help, not shaming. Ugh.
Feb 25, 2020 06:37AM hugz4u wrote:
Hi all! now let’s not let this thread die. It’s so inspirational.
Vargadoll and minus how the exercise?
Binney are you still walking inside malls and the house?
I’m still at gym. Though my hips have given me trouble ( osteo physio thinks ) I’m still in for the long haul. Just adapting by switching up my gym routine and equipment. No running more than a minute at a time or high hill climb on treadmill for me or it’s a setback. My skin has taken a turn for the worse so no swimming in chlorine either. Lots of stretching throughout day. Just gotta keep moving.
Doing all the right things but LE beast decided to also take over my other side which has full axillary nodes intact. Yes you can get Le from any kind of Breast surgery, mine double mastectomy. That makes me bilateral arms trunk and breast and it’s going to be a hot cranky summer in all this le gear
LETS CHALLENGE OURSELVES And move starting March 1st for a month. Do what you can and whatever you like even 5 min but just do it!!! no competition.
I’ll report in but can’t be typing up a storm because my dry eye disease gets painful when on devices.
Let’s go everyone!
Feb 25, 2020 07:03AM MinusTwo wrote:
hugz - great to 'see' you. Is the dry eye getting any better?
I agree - let's keep the thread going. So many people don't understand that exercise is a major part of keeping LE under control.
I go to Silver Sneakers classes twice a week and chair yoga once a week. The chair yoga teacher is concentrating not only on stretching, but on deep breathing, movements to get the lymph flowing and accupressure. These are on my calendar before anything else. If someone wants to go to lunch - sure but after class. I even make doc appointments around my exercise schedule.
In the summer I add water aerobics 3x a week. In the winter I try to walk on the treadmill 3x a week - but this last one is the easiest for me to skip.
Oh boy would I rather sit in my recliner with a good book. But I know how easy it is to get out of the habit - and it truly is a habit. And I know how much better I feel when I'm moving.
Feb 25, 2020 07:26AM - edited Feb 25, 2020 07:26AM by hugz4u
Way to go minus! Sitting is the new smoking they say. Yes we can encourage each other.
Dry eye disease is a whole different bag of cats. Progressive like Le. Losing vision slowly in one eye because of it. I'm on a whole different program for keeping it somewhat at bay.
Moving forward! Not ready to throw myself on the train tracks yet,still a lot of life left in me although these medical issues are time consuming. I was thinking if I didn't have to cook then I would have some free time left for Maybe a hobby....but then thought.....I Am my hobby! Ok eyes bugging me. Ill check in another day. Keep moving
Feb 25, 2020 08:53AM Binney4 wrote:
Hugz! Hello! Good to see you again.
I too have trouble with dry eyes, and my eye doc said many young people are losing their vision from too much screen use because studies have shown we don't blink as much when we're staring at screens, and he suggested that I remember to blink more often online. I know that's not the problem you're having, much less the solution, but it's a good warning for all of us.
Miss you here when you're away! Hugs,
Feb 28, 2020 06:52AM Vargadoll wrote:
So good to pop on and see so many posts! January and February were almost a total loss for me! I have been sick for weeks! Sinus infection the first of January. Took almost 2 weeks to get well then got a stomach bug and threw up violently for 24 hour. Took a few days to get over that.. then came acute bronchitis and that has taken 3 weeks!! March 1st is going to be my New Uear launch date 😀 I'm so glad you posted Hugz!!! Got to get back to it!