GRRRRRRRRR I HATE LE..........
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Binney ..... I am thanking you for suggesting the straps for the Jovi Paks! I have been having some interesting times getting the serratus packs to stay in place in my sports bras,,,,if they are too loose, the paks WANDER.... maybee we can design something for the Truncal LE Gals???
I have anterior and posterior ( front and back) and axillary ( armpit ) bilateral Truncal Lymphedema... for you ladies trying to manage this i am wearing :
1. Compression Sports Bra / has to fit snug. I found the Champion brand to work well with the serratus jovi paks.
2. Jovi serratus pak / one for each side....covers my chest/ armpit and around to my back..I slide it under the bra
3. A Heat Gear UnderArmour Compression Shirt/ short sleeved OVER the bra. Has to be snug. I find the Mens Gear to fit better than the women's as its wider in the shoulders and covers my armpits with less gaping.. plus its cut higher around your neck... AND has a longer sleeve...and you can pull that down over your Sleeve ( helps it stay in place....)
4. Then Sleeve and Gauntlet to my Right arm ( Axillary Web/ Cording side....)
I tried the Mediven 550 Shirt prior to the above Plan.... it was not a livable choice.
OK so that's 6 Pieces of Gear! And I am dealing.... getting more active and am having some hope that MAYBEEEE I am getting under control.....do The Stretching/ DO the Manual Lymphatic Drainage Daily / Do the Exercises/ Breathe/ Drink/ Take Breaks and Watch the Salt... It feels like Boot Camp but I want to get back to some Butt Kicking Here... I am 1 1/2 years post BMX.
The best part of my day is when I can whip all 6 of these things OFF....Whooo Hooo... for the whole nite of sleep. I am so thankful for that.
Hugs to All of you
Brazos
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well i went to see my lymphedema specialist. had no appt i just walked in. i am typing wirh one hand. she rewrapped me and we decided i should continue with the other therapist for my shulder (almost frozen) and chest spasms ans continue to exercise nd pump and wrap, and i set up appts woith her for january. she said the shoulder exercises would aggravate the lymphedema so might as well wait to see her. she spent an hr and a half with me, no appt and no charge! she is an awesme caring person. tomorrow i go back to the other pt and tell her to not treat the lymphedema just work on my other issues...she is unqualified...THAT is going to be interesting...tired, long day...hugs terri
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Terri, a really good LE therapist is a thing of beauty!
Good for both of you. Brazos, thanks for the run-down -- that's really helpful. I call my compression get-up (cami with assorted swell spots and foam pieces stuffed in here and there) my "Samurai warrior" look, and yours sounds about like that too
. Brava to you for becoming more active! It is such a challenge to feel like moving when we're tucked into this kind of get-up, but it's sooooooo worth it! Thank goodness it's winter (unless you're in Australia or South Africa). Summer's a whole 'nother issue.
Onward!
Binney0 -
My goodness you ladies are wonderful! Such determination! Just in case anyone has mild very upper arm LE ( my diagnosis was by Dr. Feldman, LANA affiliation) he was worrried that a traditional sleeve would hinder more than help me. So I went to my LE fitter at my hospital and showed her the "Shrug" thing and she said try it! So, I ordered it from LegLuxe and it is made by Solidea, (Silver Wave) and it's called slimming sleeves. I'll be trying it as soon as I get it and I'll let you know if it works/helps/hinders whatever. It may be a good choice for way upper arm LE that's mild. Thanks again for all of your help. I'll keep you posted.
Your Pal Val
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I know of a family , in Budapest, a large family living there doing ministry. How big is Budapest?
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I just want to thank each of you again for being so vocal about your concerns, observations, successes, and ideas. This is where I go when I need some balance and sanity. LE is such a chronic irritation, to put it mildly, that I need to get my mind around it time and again and again......and it's here that I find others in the same boat, with helpful experiences and an honest outlook.
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you gals really do help remind me im not slone in this darned conditon, AND mine is very mild, knock wood, compared to msny of you.. im so grateful for sll tthe knowledge here!!!
good luck, Val Gal.. i love mine. i wear it on, off, on off, somedays. gonna order the larger size next.. i think its' good to use it that eay, at least, in the beginning...3jays
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Valgal, let me mention a few things to watch for with the Solidea shrug. First, the wrist is long and tight, and just above it on the forearm is a "gathered" area that is looser than the wrist. The result can be swelling in that "loose" area where there is no compression, or even in the hand if the wrist cuts off lymph flow from it. Another problem area I found with it is at the back of my axilla, where I had never had trouble before. I surmise it is because connecting piece across the shoulder exerts some pressure at the top of the sleeve that pushes the fluid into that area.
Since some of the women here have tried it and find it helpful, it's certainly worth a try, but I just wanted you to know what kinds of things to be watchful for.
Please do keep us posted about what you discover!
Binney0 -
KC--I told my LE therapist about your using a finger wrap with a gauntlet on a plane trip--and she thinks it's such a great idea!
Thank you!
And I do get the need to check in, where people "get it" on the first try.
Kira
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Estepp Budapest has a little less than 2 million people. There are many ministries here, and lots of Americans.
It looks like I may have some success in finding a lymphedema specialist here! There are several LE centers listed in the city, working on making contacts now. Thanks, Binney!
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OK. that is HUGE! So. I doubt you know them....LOL...
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Estepp Yes, it's a big city. It's nice to hear English though - when I hear somebody speaking English, sometimes I introduce myself!
kira Pilates has been a big help in recovery from BMX. For me, it's hard to know when to slow down though - I want to get going faster than I should. Many of the arm and shoulder stretches and strengthening PT exercises that I have been given are part of the regular pilates repetoire.
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Thanks Binney, and everyone else... I will try before I fly and I will certainly let you know if it works,. otherwise it's going right back. . Thanks for the information.My best to all.
. Valgal 0 -
My freaking LE was bad enough when it was just my chest, underam, trunk...but my freaking neck and jaw?!?!? F&*&*&*CK!!! I hurt, I hurt, I hurt.
Bad, bad, bad flare. Was under control pretty good until the past week. Too many hours at work, too cold. And because I haven't been to me LE therapist in 3 months, they have to 'reasses as a new patient' and she doesn't have any openings until January.
I'm seriously over this. But thankful for this place to vent.
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Valgal, would you give me a link to that shrug thing, because that sounds like it might be good for me.
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Trisha, Binney gave you this link to facial massage in the past--does it help?
http://www.aurorahealthcare.org/FYWB_pdfs/x23169.pdf
What can we do to help, it sounds horrible?
Momine: it's the lymphademasleevecompany
http://www.lymphedemasleeveco.com/
Kira
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Ladies, I have a co-worker who's friend recently finished rads and has lymphedema in her neck and arm...THE SURGEON IS TAKING OUT FLUID WITH A NEEDLE!!!!!!!!! comments/concerns please...Thanks and hugs terri
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Terri--the only thing to remove with a needle is a seroma--a collection of fluid. LE can't be treated with aspirations, the fluid is wide spread in the tissues, and to needle it is to ask for a cellulitis.
Kira
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Terri, she could have lymphedema AND a seroma, both, but they're not the same thing. If that's the case she might want to talk to her doctor about a prophylactic antibiotic to help avoid cellulitis from the aspirations for the seroma.
What a mess!
We'll sure be thinking of her -- let us know how it goes.Be well,
Binney0 -
Hi All,
Noob here, just got my LE DX yesterday. Wondered if you now if the lympedivas sleeves are medically adequate? I have the Mediven onesie but I like the dragon tattoo look better:) Course I will ask my PT too. Also, do any of you experience irritiation of the skin right at the crease in your elbow? Mine gets pretty aggravated and I want to watch out for cellulitis...any tips for that? Thanks! Anne
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Anne, welcome! Sorry you had to join our Sorority of Swell, but glad you found us. LE is a steep learning curve -- and a curve-ball too!
We're all with you, so please tell us how we can help.Lymphedivas sleeves and gauntlets are medically correct, meaning the company has put a lot of effort into making garments that give the gradient compression required for effective LE treatment. But they are not custom made. If the fit is good FOR YOU then they're a good option, but if you have any special fitting issues you need a custom garment, and Lymphedivas doesn't make those. There are companies that make custom garments in a range of colors, but not patterns like Lymphedivas.
More to the point, though, deciding on garments is something you'll want to do AFTER you finish Complete (or Complex) Decongestive Therapy, because the therapy will reduce your arm and change the measurements so any garments that fit now won't fit a few months from now. During therapy your arm will be wrapped with special layered bandages that move fluid out of the area. Once the swelling has been reduced you'll be measured and fitted for garments to help keep it that way.
Skin irritation in the elbow crease and in the webs between fingers is sure annoying!
You can try putting some cornstarch into the toe of a (clean, new) cotton sock, closing the top with a rubber band, and using that to pat cornstarch onto the crease before you put on your garment. Also, keep your skin well moisturized to prevent mini-cracks that can invite infection. Other tips for every-day coping with lymphedema here:
http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htmKeep us posted, and be well!
Binney0 -
Cooks, sorry to hear you are joining the club. I have sensitive skin, got dermatitis on my arm, especially in the crease inside my elbow. My PT made a small patch of very thin foam for me to wear under my sleeve to help. The rest of the dermatitis cleared up, but is just about always a bit red in the crease of the elbow. My PT says it is from friction. I think the patch is helping.
I am such a klutz, it is going to be difficult for me to keep from hurting my right arm. I tripped wheeling the trash cans up the driveway a few days ago and skinned a finger and my thumb. I have been putting bacitracin and a band aid on them, and it looks very clean and good, but my arm seems to be a little more swollen. I think it may be from the mishap? And today, I cooked a frozen pizza for my son and burned my hand taking it out, but luckily it was my left hand. The LE glove kept my right hand from getting burnt. It's not like I am doing very risky activities. Do you all have any advice on staying injury free?0 -
Kay, I have a bit of klutziness but noticed the times I injure myself are when I have a lot on my mind and rushing. I have taken to reminding myself to slow down and pay attention to what I am doing. I'm not a good multi-tasker so I'm at my best when calm and focused. I know, easier said than done, but making a conscious effort has helped. When I slow down a little, I think I'm more efficient and feel less stressed. I don't mean that I'm moving at a snail's pace, but just more deliberately. I think we all have been through a lot and sometimes it's hard to find that old rhythm we used to have. Not even sure if that's possible for me!
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kay, i agree with tina.. if i consiously slow down, bf i attempt things, i do better.. my problems are with rakes, clippers. etc.. i get caught up in my gardening.. so, i've taken to wearing heavy (leather) gardening gloves.. helps when i try to make a boo boo.. and, I ALWAYS wear the "ove gloves" near the stove.. CAN'T get butned with them... good luck, my swell sistahs......3jays0
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Ann, another option can be to get a "good fitting " getup. if you need custom, as i do.. then, i make a thin covering (for summer) with any pattern to wear over the sleeve... i wear a sock, cuut off in the winter, when its cold here, and a bright pink warning sock (someone painted 4 me ) when i go to the hosp.. hope you find the right look.. it does help you feel better, about having to wear this stuff...3jays0
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Kay, as someone who fell and broke my LE hand, it was due to rushing. I was rushing out of a dark building because the instructor asked for me to give him a ride, and Obama had just passed by iin the motorcade, and all the streets were blocked, and I walked out a side door where it was dark and there was a random step.
I was takiing an adult ed course on writing, and it was after work, and I was tired.
Slammed down, and as a good LE person, had my laptop bag on my right shoulder, and broke the fall with my left hand. And I knew it was really bad instantly. Maybe the almost passing out from the pain was a clue....
So, I was really angry at myself for rushing.
Now, when I'm on campus, I walk slowly, use handrails--my students sometimes look at me like I'm nuts, but tough.
Also, with LE, the stakes are so high.
Early on, I got a paper cut opening mail, and it was problematic for a while. So know I'm really careful opening mail.
Only recently did I start to cook again.
And don't get me started on bug bites.....
All this stuff would be just nuisance if we didn't have LE.
Kira
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Thanks for the advice everyone! I actually didn't think about slowing down, but I was rushing both times, didn't want the pizza to burn, and was rushing to get into the house and start on dinner. I am going to remind myself to take my time and be deliberate. I think that will help.
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Thanks for the tips everyone. Still trying to absorb this, I race (d) outrigger canoes long distance and can't imagine paddling in one of these sleeves...pretty sure you can't without tearing your arm up...et voila! cellulitis. Pretty sure downward dog and plank triggered this so I guess I'll have to really tread lightly in the exercise dept. until I figure this out:(
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Anne, a really well-fitting sleeve and glove may actually improve your performance
-- lots of athletes wearing compression these days, both sleeves and Kinesio tape. So, yeah, you'll need to find your way back into your sport, and it'll take some trial and error, but with some good help from your therapist (and learning all the self-care skills that give you a degree of independence in dealing with it) you can look forward to getting back on the water.Hmmm -- where on earth do you long-distance canoe in Phoenix?!
Keep us posted!
Binney0 -
Ok, like things have not been bad enough with no one being able to get my sleeve right........yea, since July 6th.................the one my therapist gave me was working good, till we get the better on.......................well I took it off, in my house which is a 1 story Ranch home, which has what is known as an "open floor plan", which makes it hard to lose anything, or at least not be able to see it when it is lost.......................
IGone, I can't find the damn thing..... can't believe it.........moved everything in every room, checked the trash, all empty ornament boxes, and can't find the damn thing....................I remember taking it off........I can actually visual myself doing it, but I can't remember where I was or where I put it.
Back to the therapist on Monday, to get the new one they ordered..............what a pain in the ass this is..............I am not going back to wrapping, so it has nothing on it now.............
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