GRRRRRRRRR I HATE LE..........
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Hi all...things have been pretty good with me.
I am a bit sad, my town pool closes this week. Swimming seems to have been the thing that helped the most this year with my LE.
(Funny because last year it almost seemed to make it worse.)
I know I can join somewhere with an indoor pool, but fresh air, and a bit of sun on my face have made me the happiest I've been since BC. I feel so much better about my LE when something fun helps, it has given me back a bit of my power.
I actually thought I would be glad to see the summer end so long sleeves would feel normal. All in all it has not been the nightmare I feared.
It's funny because with this LE you can do everything right and get bad results, and then sometimes it just gets a bit easier. I want to share that shred of hope.
I hope you all are doing well.
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thanks for the link, Kira; im gonna get the rx and try it. new fitter soon... i found a jobst glove for now, otc.. lite compression (whijch i tried when Binney sugg. it & it works for me!!) it was only 40.00; so it;ll do well, till i get the customs.. you gals sure are swell...and i mean that in the good sense...lol
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just thought of something new, too. i don't have le in my legs , but have edema from the hypothyroid. dr. told me yesterday.. don't inject for my diabetes on the right side.. duh!!! wasn't even thinking about that!!! won't let them tske bp; but stick needles in the leg..grrrrr3jays
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Cookie,
Thanks for the update. I appreciate the word of hope. Yes, sometimes when we do everything right, things go wrong, but also sometimes when we didn't do everything we should have, things don't get worse! I do hope you will find a sunny indoor pool that will help you keep the joy and progress!
Dawn
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Got a new glove and sleeve today, first thing for my hand that doesn't cut off the circulation in my thumb, yay. And now I have two sleeves that fit so I don't have to stay up late to take my one good one out of the wash. Working this stuff out. People dont comment as much about the black sleeve. I'll never get medical beige again.
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Outfield...I agree with you about the black.0
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Hey everyone! catching up... OUTFIELD-what's with the "black" sleeve?
KIRA-thanks for posting all that to newcomers, I fowarded it to a new friend who just had cellulitis from her lymphedema, and thought she suddenly became allergic to spider bites.
re SEATBELTS and tender scar/radiated areas: I use one of those pillows that have beans? in them taht wrap around your neck for airplane or car rides and stick that under the strap by my tender area. It doesnt interfere with my driving and is a safe alternative to not wearing the belt at all.
UPDATE on me: I WAS being naughty and negative...NOW I am going to use my pump. I am doing amazingly well for someone who stopped wearing my sleeve (too darn hot here in MI and I dont have air conditioning). I like LEAH started doing water aerobics and am THRILLED with the ability to MOVE my body again, I was feeling so constricted form being so basically out of shape. It is now part of teh "new me" trying to live a healthier less stressful life, tickling endorphins, etc...
HUGS! terri in MI
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I love the black one. Somehow it's obviously way more noticeable (my friend and her 5 year old use it to pick me out from a distance on the softball field), but people don't ask about it nearly as much. Maybe they think it's a fashion statement? I had a black one that didn't really fit, but I wore it anyway because it took a while to figure out stuff that fit and my first good sleeve happened to be beige and heaven knows I couldn't wash it every night and stay awake long enough to get it out drying to be ready for the next day.
I still haven't figured out graceful ways to answer questions from strangers. I don't mind talking about it, I just don't know what to say to someone who expects something like "It's just a sprain." So the less questions, the better,
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Outfield...I agree..If I wear a little black dress and some attitude people think it's a statement.
The questions are hard.
I say I had breast cancer, it was in my lymph nodes, and now I have a condition called lymphedema that causes my arm to swell.
Shuts 'em right up.
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Outfield, I also say I had breast cancer surgery and I now have a complication from the surgery that causes my hand to swell. and as Cookiegal said it shuts them right up.
Sheila
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Happy to hear things are going well Jo. I haven't been bothered by stares or questions either. My sleeve and glove are such a part of me I forget I have them on until someone asks about it. Becky
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Jo, I love good news!
How neat that your therapist is also practically your neighbor! Good therapists are GOLD! Just a suggestion: once you're on your own DO wrap your arm at least once a month, because otherwise when you need it you'll be frustrated out of your mind trying to remember all the steps and get it right.
There's nothing quite as exasperating as trying to relearn it all when you're already frantic because your LE is flaring. (Voice of sad experience here!
)Be well!
Binney0 -
Hi Binney......................still waiting for my garments..........it is about 10 days since they were re-measured and ordered..........I just hope these are right this time...............if not I will not be happy..........not sure how the mfgr. screwed up, but they are doing them over..............the first time it was 1........this time its 2 day, and 1 night garment..............they better pay attention this time, and not put an apprentice person on them...........haha......................hope your doing well.............will let you know how I make out with the new garments.........I am so tired of wrapping, but it is a necessary evil.................just want to be able to do this with less effort........................hugs.
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Ah, ducky, getting out of the wraps into well-fitting garments feels like freedom!
Sometimes I think the wrapping is just to make us happy to accept living with compression garments for the rest of our lives.
Hang tough -- you're almost there!Keep us posted. Hugs,
Binney0 -
Jo-5.......................I've been doing this for sometime now, and can't count how many rolls I have dropped...........I use to say "ok, close the windows, lock your doors, take your kid inside....."............Ducky is going to wrap..................I have uttered words I only heard from inside the huddles at the football games when I went to my grandsons games when they play college football.................I wrap, and then have to go to "confession" on Saturday.............so welcome to the club.........................however my therapist tells me I could be the Poster Girl for LE wrapping...................however they also told me I was the Poster Girl for blonde haired, blue eyed RA patients..................as I still sit 1 month after Rads are over, itching my chest like a monkey.............and can't stay awake when I read or do a crossword puzzle............go figure
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Oh yes we are Jo.................but a nice mess.................we'll get it right one of these days.........at least with Binney's help..............................hahahahaha
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Terri-glad things are going well in Michigan (go blue!--guess where I went to college?), and whatever works is the goal.
The water aerobics sounds great, and getting your strength back while treating your LE, that's great.
Always good to hear good things, and there's really no one "right" way to treat LE, but to have all the tools and figure out how to apply them, and adjust when needed.
Kira
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My ONC has diagnosed me with lymphedema and referred me to the lymphedema program at the local hospitals PT program. I've had 4 treatments (low-impact)massage only, however, I have questions that maybe some of you could help me with. I had bilateral mastectomy with axillary node dissection (Level I through III removal of nodes on right, Level I only on left). The left arm swelled first and I started doing aerobics in the pool and the pain and swelling eased up, however, the aerobics to the right side resulted in "severe" LE to the right arm, chest, axilla areas.
My therapist massages the fingers, arms, chest, shoulder, abdomen, pelvis, etc. My question is, now that all the swelling has been massaged into the axilla region ( and we are talking the size of a baseball front, underarm and back ) how do they get it out of there? I know the one of the particular lymph nodes she's trying to make work is gone, I had a 22mm tumor there. My primary was 9mm in the right breast with 5 tumors in the nodes at the time of surgery, and another developed during radiation on the back, RO zapped it, and explained that it was the nodes still catching the outflow of cancer cells.
The therapist has indicated that after reduction in the arm lymphedema, the intention is to sleeve and sling the right arm. Won't the sleeve keep the swelling exactly where its at now? I don't know and I'm just really frustrated with all this. It doesn't make sense to me. Shouldn't the swelling be massaged towards my shoulder and across to the left side of my back to where we know there are nodes intact to carry it off? Can't massage it to the left chest and arm because of the surgery, port, and radiation fry. Help?
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Bettereveryday: it's such a steep learning curve with lymphedema.
The goal with the lymphatic drainage massage is to move the fluid to areas than can drain it--it doesn't sound as though either axilla is up to doing much, so the alternative path would be to the groin nodes, the nodes in the center of the chest and the back. There is also an area on the neck, called the "terminus" which is cleared first and can take fluid--that's when it's brought up over the shoulder.
I don't understand why your therapist would "sling" your arm--lymph moves with muscle movements, and yes muscle movements can overwhelm the system--like the aerobics--but we do need the muscle pump and deep breathing to move lymph fluid.
One of the women on these boards says her therapist says lymph fluid moves "slow and stupid"--and that's the speed and pressure at which she moves it.
Here are some links for information:
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
There are many topics on that page, including an overview booklet from one center (not all centers agree with each other, but it's a good reference.)
It sounds as though you have truncal swelling, so here's a link to truncal lymphedema:
http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm
The National Lymphedema Network has position papers that go over treatment and other topics:
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
And, when I was first diagnosed and was absolutely clueless, I found JoAnn Rovigs self care videos really helpful:
http://www.nwlymphedemacenter.org/
With lymphedema, you reduce the size of swelling with manual lymph drainage and wrapping and special nighttime garments that are quilted chipped foam (jovipak, solaris are two brands and they make garments for trunks and arms) and you maintain reduction with compression garments--like a sleeve and glove, and truncal compression for the swelling in the trunk. Some women don't swell at night, and don't need to wrap, but many do.
This is overwhelming, but I hope it's a start, and always ask your LE therapist what's her plan--doesn't hurt to get as much information as possible.
It's a lot to learn, but we do figure it out (with the help of this board, at least for me.)
The JoAnn Rovig videos review the lymph system, so they're a good start for your very important question--where to put that fluid??
Kira
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Kira--just got back from the step-up step-out page, again thank the good Lord for this site. I have been beside myself with this thing. However, I did ask my therapist when she said they were going to sleeve me about the visible mounting swelling to my chest, underarm and back and she said "there's nothing for that". Think I'd better go therapist shopping?
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Goodness, yes, BetterEveryDay.
Definitely time for a "second opinion." There are LOTS of options for controlling chest, underarm and back swelling.Did you find the StepUp-SpeakOut page about how to find well-trained lymphedema therapists near you? It's here:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htmKeep us posted!
Gentle hugs,
Binney0 -
I haven't had too many questions from strangers but mostly from kids. I teach Sunday School and one of the 5yo asked what was on my arm. I happened to have a black sleeve on. I told her I had surgery and it makes my arm feel better. I wanted to say it was my bionic arm. My 3yo goddaughter kisses "my owie to make it feel better" She must think it is a big bandaid.
I was supposed to have a Solaris sleeve ordered in May. My insurance won't pay for it so I applied for a grant from a local organization. Just found out the paperwork was not submitted. So staring over. Ugh. I don't like having to ask for help but did not have $700 to pay for it. Sometimes I really hate LE.
On a brighter note, I went to a fantasitc horse clinic for 2 days.
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Nicole, great news on the horse clinic. Two wonderful days all about horses -- it doesn't get any better than that!
Penninsula Medical, the ReidSleeve (night sleeve) company, has a program called the Noble Heart Fund that provides a night garment at cost or free, depending on one's financial status. They also offered this information on Medicaid payment for their night garments (Maine included):
Medicaid Coverage
It became apparent to us through the enthusiastic response we received after our eNews featuring the Noble Heart Fund that many of the applicants were on Medicaid and were unaware that Medicaid, in many states, covers ReidSleeve products! We thought we should bring awareness to this topic and give our eNews readers some additional information about coverage with Medicaid.
Peninsula Medical is contracted with many state Medicaid programs and the benefits under these programs cover ReidSleeve products!
If you know someone on Medicaid in any of the following states (maybe even yourself!) and you would like to pursue a compression garment please contact us to get your authorization going.
Arkansas
California (MediCal)
Idaho
Illinois
Indiana
Iowa
Kansas
Kentucky
Maine
Michigan
Minnesota
Ohio
Tennessee (Tenncare)
Utah
Virginia
Washington
Wisconsin
There are several other states in which Medicaid covers the ReidSleeve, where we have authorized providers we can refer you to. So even if you don't find your state in this list, please contact us so we can hopefully refer you to a contracted Medicaid provider!Hope that helps you or someone who needs help with the insane cost of LE!
Be well,
Binney0 -
That's a good answer for a question from a kid. I find those the hardest. Despite having two kids, I always feel like I don't know what to say to other kids. Or I should say kids I don't know well. And they do tend to ask a lot.
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ack...I'm I dum dum...arm is red...my black sleeve is NOT good on a hot sunny day...now my arm is warm red and swollen.....I even swam today
Professional events in the summer sunshine are about the hardest thing to deal with.
at least I know now not to freak and go on antibiotics
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Binney--Since I received my jovipak I have not wrapped. I took you advice and wrapped last night. I was rusty but was able to do it. It did not bring back good memories of the wrapping days!
Ducky--I can't wait until you get your sleeve to see what you think. You always say it like it is!
bettereveryday--Yes you can get help for the truncal LE. My therapist has really been helping me. Hope you can find someone who will address it.
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Nicole, I once got the "wholesale" price list from Solaris, and their recommended markup is 100%, so the wholesale price is closer to 350$. When it's covered by insurance, the DME supplier charges retail, and the insurance reimburses a fraction of that, and the co-pay is based on the "allowable amount". Insurance does tend to discount LE supplies to the point they lose money on selling them, unfortunately--more for glove than night garments. (My recent 300+ dollar custom glove was "allowed" at 200$--and I'm responsible for 20%)
The only people who pay full retail are self-pay--not right. Just like the uninsured and heath care.
I personally think that when insurance is not involved, the companies--Solaris/Jovi should have a reasonable price for the paitent.
I know that in healthcare, if you agree to participate in insurance, you aren't allowed to reduce your rates for a "cash", uninsured customer, officially, but since Solaris and Jovi don't contract with insurance, but sell to participating retailers, you'd think they'd come up with something reasonable.
I think their move to sell via Lymphadema Products and Bandages Plus for the ready to wear stuff is that attempt.
I am impressed by Pennisula Medical and their generosity.
The NLN's garment fund is kind of lame--you have to join the NLN and see a qualified therapist--before they'll even consider the garment coverage....
Was it a dressage clinic? I drove by the barn where my horse lived, and I still miss him....He kept me in the moment. And a warm neck snuffle is always appreciated.
Bettereveryday: if your therapist won't or can't deal with truncal LE--and you can share the article on the page with her, I think it's time to find someone who can. The whole quadrant is affected. front/back/arm and with you it's bilateral, so everything above the waist, and the therapist needs to deal with the entire quadrant.
Truncal LE is so common and so under-diagnosed and treated.
Becky: I haven't tried my Solaris since just after the fracture: I moved, but I found the box, and the owner of the company told me to try swell spots on the hand. Hopefully I can go back to using it here and there. My LE therapist wants to "back off" on my wrapping--for her, it means to still wrap, but less bandages/foam. At one point, I only wrapped to the elbow....
Cookie: hope the arm is settling down. My dog (avatar) is black and tan, and her back sure heats up in the sun. Thank goodness for an amazing LMT in NYC who gave you some great advice and answers.
Kira
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Kira...you are so right.
One of her best suggestions was to get the cooling fabric in the Juzo custom...it really makes a difference.
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Ladies: I've been reading this thread for some time and have reviewed much of the StepUp information. I hope you don't mind what may be dumb questions.
Here's the stats: BMX in February, DCIS & LCIS, 8cm tumor Left & 3cm tumor Right, Grade 3/3, Receptor negative, SNB - 2 on each side - negative, clear margins w/no rads, chemo or drugs at this time. I'm older but hike & bike & swim & fly & work out at the gym 5x a week - at least I hope to do all that again.
I'm coming up for exchange surgery next month & am really worried about how pro-active I need to be. BS, MO and PS all told me I'm in no danger and don't ever have to worry about LE, and yes it's OK to have blood drawn, pressure taken, IV lines, etc. Until I started reading your thread, I thought I was OK. Of course I had no measurements prior to BMX, (does anyone know before they go?) but I don't appear to have LE at this time. I think I can trace any swelling to extra salt or MSG. I've been doing water aerobics regularly since BMX & the pain seems to be mainly the darn TEs.
Since I had bilateral surgery it's impossible to "use the arm that's not at risk". Does it sound right that my risk is 5% to 20%?? Maybe I'm on the lower end since I didn't have radiation?? Should I meet with some kind of LE specialist before my exchange surgery?? If so, does anyone have a personal recommendation in Houston?? Since I have 6 mo post ops appts with BS & MO before surgery, should try to get one of them to measure me? Should I measure myself??
Since my docs all discount the possibility of LE & my 40 yr old son would be likely to think I worry too much, I'd appreciate any thoughts, comments, recommendations, etc.
Thanks in advance.
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