GRRRRRRRRR I HATE LE..........
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It's like being a boxer and having sparring matches with ourselves. Should we add this to the Olymphics events? We need a good name for the event.
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Definitely an olympic event Carol.
Not much good at naming things
these 4 lines I'll explain
step up girls and guys with names
for this punching game!Thx
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Nice rhyme, Musical!
Here's an Olymphics event name to consider: the 'one-fisted compression punch.'
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LOL!
Love it!
Do we determine the medalists by the blackness of our eyes?
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LOL
A "one fisted compression punch"
see it to believe
will I soon be "out to lunch"
wrestling with this sleeve?0 -
With punches here and knuckles there
we might just shed a tear
so black eyes likely are a part
Even from the start0 -
No rhymes or poetry tonight, but had a couple comments. Flexitouch went with me to FL vacation for 2 weeks and I used it twice a day except for once. I just cannot do self MLD for more than about 15 minutes, so this is great for me. I hate that it keeps me tethered to one spot, hate getting that back pain about 40 minutes into it and those last 20 minutes seem to take FOREVER, but overall, am pleased with it. Measurements don't really go down with it, but it does provide comfort especially at the end of the day. I do have trouble getting the compression adjusted in the hand and wrist area, and often end up with more swelling in my hand after treatment; I tried using a glove to protect the fingers, but nearly got blisters on a couple of them, so ditched that idea. Am still searching for the best solution there.
I purchased an arm butler and it is one of the best investments to help get those sleeves on!!!!! Got it from Brightlife.
Am still in process of finding right garments, but getting a new LE therapist next week,so am trying to be patient for another week and told my MO today that I will continue active cancer treatment for another month until we see if we can get my arm and hand functional, but she reminded me that because I have local recurrence, this may be as good as it gets, and will definitely get worse if I discontinue cancer treatment. So I am hoping the combination of that plus more aggressive LE therapy will give me back some life soon. I feel like I have been dealing with the amateur team and wonder if anyone has any experience with a true LE center, or LE specialists, either in rehab medicine or LE research clinic.
Best to all of you tonight. Have taken a 30 minute break between Flexitouch and Tribute night garment to type. It was a nice break!0 -
Linda, it was very hard for me to find a good LE therapist. I got some seriously lousy care at the onset and the first PT may have set me up to get the LE: I had cording and a seroma and she had me doing tons of exercises with the arm....
Luckily I found my great LE therapist who is an LMT and she wanted a PT involved for the cords and I saw 5, all with good credentials, but not helpful to me and possibly harmful.
When I took the CLT class I realized that it prepares you, but sure doesn't ensure excellent clinical care and more experience and knowledge and mentor ship are needed.
On an positive note, of my class of 12, there were some great PTs and LMTs and we keep in touch. And one woman whose hospital forced her to get trained is just great and taking the LANA exam next month.
They're out there, just a bit hard to find and I insurance makes them rush and end therapy as though its an acute, not chronic condition.0 -
Kira, I had to go to PT just recently and the LE therapist was in the same office. I found when the PT started me on light weights, I started to swell. I guess I'm one of those who can't use weights? I had to go back to the LE therapist after each PT visit to keep me in control.. I know my insurance is maxed, so they won't cover these visits. BUT some how we haven't gotten billed for them yet. Hmmm. I think I won't say anything about that. Each visit at our center is $340. I went for 6 weeks to both
.. Not looking forward to yet another bill. QUESTION: How long after you get bit on your LE arm can you wear the sleeves again? My arm aches so much without them.
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So what do you call it when your spouse accidentally pops you in the jaw while "assisting" with the sleeve? Yep, been that kind of week!!
My arm is aching today even with the compression sleeve on. I just don't get it! I am getting back to the gym tonight. They finally hired a new trainer and I'm going to meet with him to map out a workout plan with him. I love strength training but I've been so afraid to go alone because I don't want to do the exercises the wrong way and then injure myself.
On the plus side, there is a bake sale in the lobby of our building this morning and the vanilla cake I just ate almost makes my arm feel better. Not sure though, may have to try another..
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Lainey - You could call it "Painful Assistance" LOL..
I don't need Spouse to do that - I do that myself - Self inflicted jaw pain LOL
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Lainey-It has to get better, right?
My arm aches today and I'm sure it's the weather...big storms around. Weather, barometric change can affect us.
Vanilla cake, chocolate too are all pretty good remedies.
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nibanna...did it one day in front of my therapist after my mld...we both laughed so hard. Not gonna lie it hurt!!!
Mags
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Ugh, I had to go home from work early yesterday! My aching arm spread to my head and my stomach. Not sure what it was. I refuse to believe it was the double fudge brownie with nuts that I had for lunch.
I had my demo with the flexi-touch yesterday and really love it. It felt so incredibly good. Fortunately my insurance is good and will cover 90% of the cost but it will take about 2 weeks to get it. The woman that brought it by to demo for me is actually a LANA certified therapist so it was great to sit and talk to her a bit. I was able to get more information from her that was helpful. It was nice to be able to speak with someone who actually knew what the heck I was talking about. She said that the super hot weather we're having right now could definitely be contributing to the extra pain I've been experiencing lately. Looks like another 105 degree day here too. I can't wait for Winter!!!
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Uh...Lainey, sometimes women who are about to discover a cellulitis problem, report that they felt sick like the flu beforehand. Just sayin.' Take a look at your arm in the mirror, front, back, top, bottom, and around your shoulder, too. Make sure that's not what's brewing! If you see any hint of a pink or red splotch or spot, draw a circle just outside its boundaries with a marker and then call your doctor. If it's after office hours, go to the ER for evaluation. The marker will tell you beyond doubt if the spot is spreading, which would be a big hint to whoever sees you.
To others who use the flexi, is feeling icky something that happens until you get used to it? I'm clueless on that one, but it's worth asking.
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The flexi has only been good to me. Teaches me patience (MLD - setup - treatment- remove - MLD = about 2 hours), very soothing if the fit is good (light touch like MLD), eases the achiness and reduces swelling. I do MLD before and after - wasn't instructed that way but saw it on the board somewhere and took it to heart. It's a nice way to get a nap or get caught up on recorded shows. I don't use it daily - just when MLD needs a boost. Usually in the evening since it's relaxing - always helps me sleep well.
Heat, humidity and repetitive action are definitely my triggers.
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Carol, thank you for bringing that up. One of the conversations I had yesterday with the therapist was the subject of cellulitis. Before LE, I had no idea what it was and still pretty clueless about it. She did tell me that there will be flu like symptoms and not to ignore it because that could lead to big problems. I checked my arm and didn't see anything but will keep a close eye on it. I was wondering too if using the Flexi caused the icky feeling I'm now having.
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I've been using the Flexi for 1.5 years - never made me feel icky.
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Yeah, I was thinking that was probably impossible. At least I hope so because the Flexi felt so good!
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When just starting LE therapy some people experience a queasy stomach after MLD for the first few days, but I've never heard of that with the Flexi, and since you're not just starting MLD that seems unlikely to be related. (Nothing's impossible with LE, though!
)Here's more information on cellulitis--good to brush up on symptoms now and then since it's a sneaky bugger!
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htmHope you're feeling lots better!
Binney0 -
Just wanting to say that I use to love summer but since we have only had one day of rain since end of June I am beginning to dislike the sun. I actually said to myself yesterday that I miss rain even though it is so depressive when it comes day after day, month after month for us here on the west coast.
My arm feels tighter and tires more this summer. Its gotta be the temperature even though I am not in the sun. Grrrrrr. Thats my story and I am stickin to it.
New olymphic activity to add. Body wrapping doctors in LE denial and then sitting them on a hot beach with no water but lots of salt intake.
ohhhh did I just hear a doctor say they were a wee bit thirsty and swollen. Humm.. he is ousted out of the Olymphics immediately.0 -
I haven't posted lately because I had DIEP recon. surgery on July 18th. What a trip. I had written before about foot/neck IVs. Whew. Foot IVs are so painful and when you're nervous your veins spasm and only make it harder to get it in and flowing. I had a horrible experience with that before a preop abdominal CT. Then when we finally got it in, the CT didn't work because the timing of the dye injection was off because it was coming from my foot, not arm. So frustrating and scary! I met with the anesthesiology team about IV strategies before surgery and we agreed on neck and ankle IVs. Well, at surgery time the anesthesiologist couldn't get the ankle vein to flow so he did the neck then and there. After surgery I noticed several new scabs on my ankle. I used a sleeve donner in the hospital because my arm and tummy movement was limited. No more socking myself in the face! After I was discharged, I was back in the emergency room twice, for constipation and pleural effusion, both requiring IVs. A doctor is required to put in a neck IV. The last ED doc said I have scarring in my neck vein already! Both sides of my neck have had multiple attempts and the left has had more success, but is now scarred. Surgery was a breeze compared to all this IV hassle. I need a strategy but I don't know what it is. I am going to have many years to deal with all this and it scares me. Good news is, my arms are still stable even after surgery. And I have soft new boobs and a tummy tuck.
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Jeannie, Missed you but so glad you are on the mend. Yah those dang needlesget the best of us don't they. I would rather have my toenails ripped off then get a needle inapproriately placed in my ankle due to a poor attempt. I usually got to the hospital not a lab and ask for the best foot draw nurse.
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Today's the day. My sister is hosting a fundraising event for the Susan Komen 3-day walk. She's having a big backyard BBQ with a DJ, raffles, door prizes, etc and expecting one hundred people! The event is 2-6 in the afternoon which is the hottest part of the day, it's going to be warm and my LE arm is already a bit achey.
Just hoping for a 'good' day where LE behaves so I can be outside more then inside. Today I need to support my sister (like she has supported me for the past two years). I did everything right yesterday, wore my sleeve - did my MLD - used the Flexi - I'll breathe deep all day and hope for the best!
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Ohio, be sure to drown yourself in water, because hydration could make a big difference on a hot day! And...have fun!!! What a great event! Thank your sister for me!
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I haven't been here in awhile but I've just gone through a 10 day period of partial denial. I did MLD, used my flexitouch and wore my tribute but decided that I didn't need a sleeve & glove. Yesterday I was shopping the sales and in the dressing room, holy crap, my arm looked huge in the back just above my elbow. I used to swell art my wrist and fingers and my upper arm would sometimes feel heavy. I've been really enjoying wearing my rings (left side) but I guess I'm going back to my glove and sleeve and wrapping until this is under control
I'm surprised because my arm never felt heavy. Does this mean I let it go too long and I've lost that biofeedback warning? Any one else go through this? I hate my sleeves in summer and the never ending questions about my arm. Looking forward to wearing long sleeves!0 -
Great event. Raised $1200 towards the 3 day walk. It was hot, wore my sleeve. Drank lots of water. Was mostly outside. Had some swelling. Did MLD and flexi after event and I'm back to my version of normal today.
I travel tomorrow, by car, and I'm not taking the flexi. Just wearing my sleeve and relying on MLD for the week.
Just gotta say grrrr.........0 -
When I first started MLD for my breast LE I would really have to pee, ha! Sometimes I would feel a little queasy, other times just tired. It sucks because you're not sure what's going on and your mind can take you to places you don't want to go! With my first bout of cellulitis, I def. felt sick, was running a fever, swollen, red. I went to the ER and was started on IV antibiotics immediately. I was told that not too many doctors are familiar with cellulitis (what?) and you don't always feel sick when you have it.
Jeannie, congrats on the new boobs and flatter tummy!
Ohio, how nice of your sister to fundraise for the 3 day event! (are you going to camp out with her?). It sounds great. Maybe one of these years....
((Gentle hugs)) Sheila0 -
Ohio, That is such good news on the grrr forum. It is nice that you will be meeting the rest of the gang even though it is by car. That such is good support you are giving. Do lots of fist pumps too.
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So I treated myself last Friday to a massage. The therapist is trained in lymphatic draining massage so she combined that with a swedish massage. Oh my it felt soooo good. She was telling me that the queasy feeling I get sometimes can be contributed to the fact that the lymphatic fluids are moving through the body and since their main job is to carry toxins out of the body, that could be causing the queasy feeling. She said the trick is to drink alot of water to move it along towards the urinary tract. Aha! I felt so enlightened... haha
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