GRRRRRRRRR I HATE LE..........
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Thank you friends, I do feel a bit better. I called and asked about my pre-op blood work and the nurse said it looks great. So I decided I am not going to worry. I spent about an hour in the garden. The snap peas are starting to peak out.
We just had our Max at the vet; only to pick up some rimadyl for his sore leg and got his nails clipped while there. His quiks are really long. He is our baby now; a beautiful and very sweet black lab (english). He will be 8 in June. Eighty nine pounds.
DH's sciatic is acting up. I am going to give him a bit of reflexology. Giving him some lovin' should make us both feel better.
Thank you for holding me up. I really appreciate all of you!
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Thank You JO-5 for your thoughts and ideas. I have been in the freak mode on and off with this. And I am just so sick of things going weird on me.
Thanks Binney again. I have been doing my stretching and exercises everyday, breaking up activites into smaller pieces of PIE..... I am not even aware of my LE even being aggrivated... no peu d orange. But it does seam like underneath my skin is so many round bumps and some are bigger. AAAARRRRGGGGAAAAHHH.
Someone tell me this can wait till Monday....and I will be ok with waiting. Or call tamara.
Thanks for being here as always.
Catch you later
xoxoxo
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(((((HUGS)))))) Barbara
On vacation with dial up so I am glad to be on today. I am doing good despite everything. I am very thankful that we have cool weather today. My mom doesn't like running the AC and I am staying upstairs. I ran the window unit the last two nights because I just couldn't stand it even then I couldn't stand the night sleeve on for long. She doesn't cook when we are here either so eating out and the salt ugggg. Like I said I am so thankful that so far I don't feel like I am swelling other than in my legs and ankles. Yeah better there right.
Hope everybody has a great Easter...stay away from the ham.
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The weather where I live is making the LE almost unbearable! We've had 30-40 temperature swings for a couple of weeks ... tornadoes, hail twice this week ... (some damage on Tuesday ... tonight it was like we were a tornado sandwich ... tornadoes to the north, to the south, thankful not where I am) ... but my fingers are more swollen than ever .... yesterday my left arm so badly it almost brought me to tears .....seeing a therapist is not an option at this point because I still have no insurance. It's gonna be like like this for several more days ... some stupid low pressure system is just sitting right on top of us! Ahhhhh!!!!!!I just need to seriously ggggggggggggggggrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!!!!!!!!!!
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I started to put this question on the wrapping site, but it seems as if no one has been on for awhile. Why should one make a fist when putting the last two stretch bandages on? My therapist has me do so and I asked her why. She said she did not know but that she was just taught that way. In wrapping myself I forgot to do so once and could tell no difference. I have told her I am on this support site and she said for me to ask my experts. Anyone have an answer?
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Becky: it's so the bandages are put on with the muscles contracted so they work best to move lymphatic fluid--that's what my LE therapist says:
The hand bandages are put on with the fingers widely spread, so it doesn't stop you from moving your hand, and once the hand is done, you close your fist, tighten your muscles, hold the arm straight and put on the whole arm ones.
I will try and find you a reference--likely in a Foldi clinic book that I don't have to explain that it's not just dogma. I'll also ask my LE therapist.
While we're on the subject: Joe Zuther blogged about wrapping and recommends replacing the foam frequently--my LE therapist says it's good forever, unlike artiflex--and washing bandages every other day--my LE therapist says weekly. And she worked at this clinic in NYC where they had patients all day, wrapped them twice a day and worked with Zuther.
http://acols.com/lymphedematoday/?p=386
Notice the picture, they're going up the arm, without the fist clenched....
Kira
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Hi, Becky,
If I don't clench my fist or spread my fingers way far out then I bandage too tightly and my hand swells up like a chubby little balloon.
KittyDog, girl, are you sure you're on vacay? It sounds kinda not fun. I hope you're managing to have some good times...me + no a/c = a bad time for everyone. I don't do 'hot' very well.
Binney, I have been mini-tramping (I love saying that soooo much) with my hands down so maybe that's the problem. I will try some elevated hands/mini-tramping and will try extra hard not to fall off.
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Dawne - I am sorry the weather is making your arm hurt! Does the self massage help at all? It's been in the 90's here and my arm gets hot and I have to do the massage at least a couple times a day. I am still new to all this though and not always sure what the right thing to do is.
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Thanks so much Kira and Suzybelle. Sad when we are enlightening our therapists rather than the other way around! I am getting back into walking on my treadmill and out at a park I go to. I sweat so much that I will have to wash my wraps daily. I have two sets now. Maybe it will be easier when I am in a sleeve in daytime. Suzybelle, the first two times I was wrapped I did not spread my fingers and it did hurt. I just started doing it automatically and it helped. The LE is not in my hand so my fingers are not being wrapped. I am wrapped up to my knuckles. My therapist does not use foam. After the stockinette she puts cellona halfway up then a batting of some kind all of the way up, then the bandages. When I asked her why she does not use foam she said it was because I have no fibrosis. Does this sound right? My therapist is not LANA trained. She was trained somewhere called ACOLS. I am not truly comfortable with my care but a LANA trained one is too far away while I am working. I finish for the summer in three weeks and may switch. I learn more on this site,NLN, etc. and sending off for information.
Dawne-I am so sorry that you do not have the insurance to see a therapist. I do hope your weather settles down and you get some relief. I am dreading the summer heat.
Becky
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Becky, ACOLS is Joe Zuther's school. The link I put in above. Therapists will have their own rationale for what padding they use. I use the foam, because I find artiflex both itchy and it falls apart.
As far as I know, I don't have obvious fibrosis, but the foam padding is just so much easier.
Yeah, we do know more--and we band together and share it.
Kira
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Hello ladies,
I'm joining this thread. I had ALD on 12/30/10. I pushed to get lymphedema prevention and a sleeve preventatively as I like to exercise a lot. Well, last Saturday, just 12 days after learning how do to the massage, I noticed swelling in my hand and arm. I went to see the lymphedema specialist on Monday. She taught me how to just do the wrap with the guaze. So, along with the massage 2-3 times a day, I've been wrapping my arm at night and wearing my sleeve with the wrap on my hand during the day. It seems that the swelling is going down. She said that I'm at the stage that it can be reversed. Does that sound right?
Along with being angry, I also realize I have a lot to learn to manage this and hopefully prevent it from getting out of hand.
I was a little upset because I had complained of my arm and back hurting when I saw her two weeks prior. She kind of dismissed it. I'm actually on my 3rd PT/LE person. Mainly b/c she's closer to where I live. Also, I was dismissed by the 2nd PT lady I saw. I've been told twice to come back after I have radiation. That 'normally' LE doesn't happen for 1-2 years after surgery. Well it was only less than 4 months for me.
Any advice would be helpful! If you think there is anything more I could/should be doing. Thanks ladies!
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Oh and I should mention I'm not even through chemo yet. Radiation isn't for 2 more months. I still don't have full range of motion back in my arm either from surgery. I also have axillary web syndrome. Grrrrrrrrrrrrrrr
I think this is more devastating than the cancer itself. When I knew that I had to have the axillary dissection, the #1 thing I said was, I hope I don't get lymphedema.
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Oh and one more thing...haha
I think I've been asked about a billion times this week..."What did you do to your arm?"
I'm sure you can all undrestand.
I find myself praying...please don't ask about my arm, please don't ask about my arm, when I see someone staring at it...sigh....
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Melanie - I was hoping I wouldn't get it either and I 'only' had two nodes removed. I got an infection (mild) about 10days after surgery at the sentinel node area and when I radiation I developed the cording and lymphedema. So even if it's just a couple nodes we can still be at risk. Ihope your new therapist can help. Mine really helped resolve the cords and I am grateful for that.0
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Melanie - I was in the elevator and this older man asked if I was playing pro ball - apparently pro ball players wear sleeves. I started to explain and we both started laughing because I ended up just saying yeah, pro ball that's it!0
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Suzy,
When I rebound (mini-tramp does sound like more fun), I hold on with one hand and raise the other for a while, then switch back. I think Lindalou just does a couple of minutes at a time several times a day. Maybe it would help to "tramp" for shorter periods, more times. Just a thought. I need a brownie. That's a GOOD thought.
Dawn
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Geez Kira--I have been on Zuther's site and did not process that it is acols. My therapist says she would like to be LANA trained so I guess she had one of the shortened courses. She is also from the Philipines and said she had training there prior to acols. I feel like she is wrapping me okay. But she only gave me Zuther's exercises and never had me do them. I was doing them way too fast until I got Healthy Steps. Plus she only massages my neck, affected torso and arm on one side (except neck). l have been doing the same but now it sounds as if I should be doing both sides and the groin areas. (I have watched Rovig's videos). She has had training in kinesio taping but when I asked about a compression bra for truncal LE she said to just buy a tight tank top. But it is much better with the tape. I guess I will still continue my self quest through reading and all of you giving your input until I can switch. But who knows if a switch will be any better. Oh well not a good day. I can't wait until I am in a sleeve. Becky
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I am so thankful to have found this thread... don't know why I didn't research it before
I met with a LE/pt when I need to fly and he gave me a script for a sleeve. He said that my arm didn't really show "bad" signs of LE but since I was flying it would be a good idea to have the protection. I saw him for about 10 min just enough time to measure. The second app't was scheduled because I told my PCP that I just wanted to "lop" my arm off it hurt so bad. So we sent up another app't with the PT. He spent 30 min with me this time... measured and gave me papers on how to do the exercised. He never once showed me how to do the MLD. For this he charged my insurance $400... of which I had to pay $200. UGH. I need to go again because this is getting the better of me but haven't found anyone in my area other than the hospital that does the LE/PT. I do have the sleeve but it doesn't always help.
I get flairs (I read the first 15 pages then flipped to the last 5) So much information and it makes me sad that the help is out there but where to go is frustrating! My PCP has helped the most probably because his DM also was diagnosed about the time I was. Yet, most MD's don't have a clue what to do....
Can you tell I'm in pain today.... thanks for letting me rant!
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Melanie Ann, LE stinks, it really does--but you are in a good place to get it under control--realize this is a tough time with rads/chemo stressing your system.
A few of us who post here and learned from each other created a web site, and I hope the information on it answers some of your questions
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
Also, the national lymphedema network has position papers--written more for therapists, but very helpful in guiding you about the care you deserve
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
My LE showed up 3 weeks after surgery--there is no time table for this stuff. It happens when our lymphatic sysem gets overwhelmed, and is damaged/ under stress.
I went through quite a few PT's before I ended up with someone I could work with--and actually use a massage therapist--very highly trained--for maintenance.
It's a steep learning curve, and one you never wanted to do, but we're here to help.
Kira
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OMG...I finally got caught up on this thread. I learned a lot. Gonna start thinking about doing some of the special exercises.
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Melanie_Ann - I cannot give you a lot of advice because I'm new to the LE world too. But I can offer my sympathy and share in your anger and frustration. I think in some ways LE is more devastating than the cancer itself because it rears its nasty head when we're we're through it or at least through the worst of it ... we should be piecing our lives back together and then this ....
As for the 1-2 years ... I started having a problem five months after my BMX and I only had sentinel nodes removed on both sides.
There's no way around it... LE is sucks. I too am active and wanted to get back to all things I was doing prior to BC to stay in shape ... it's a long road back .... I'm still trying to find my way ... but know we're here and we get it. We've been there ... the tears, the anger, the sobs, the frustration, we know, we really do.
There are some very knowledgeable women here and they can guide you, teach you, show you through this d@*$ condition. I can tell you there is light at the end of the tunnel.
[[[[[big hugs]]]]]
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Yikes! Haven't been reading here for 15 hours or so, and there's a whole lot of GRRRRRRRRRing going on!
Huge hugs all around -- I'm so sorry for all the grief and the struggles to find good treatment.MelanieAnn, what your therapist meant by "reversed" is probably not what you're thinking.
She doesn't mean it'll go away, she means that with proper treatment you can get it reduced back to normal size, and with diligent self-care you can hope to keep it that way. Sure isn't clear why she's wrapping your hand but not your arm -- maybe ask her about that. At any rate, in order to be reasonably independent with your self-care in the future, learning to wrap your hand and arm yourself is important. Please keep us posted!Samsue, have you checked out all the links on the Therapist Locator? For some you have to enter your zip code, but they're fast about responding:
http://www.mylymphedema.com/therapist.htm
Definitely look around for the kind of help you need!Becky, the MLD your therapist is doing sounds about right, actually. She could clear the nodes in the opposite arm and/or the groin before starting (depending on which direction she's moving the fluid), but the actual massage is neck, upper chest, arm, then the rest of the trunk on the affected side. And mine ends with the neck nodes again. A lot of therapists don't automatically suggest compression bras, because for many women a sports bra, cami, or body shaper is sufficient and considerably less expensive. Considerably! The Kinesio taping sounds like a great solution for you.
ACOLS is one of the schools that offers full training, BTW.LANA is another subject altogether. LANA does not offer any training -- it only certifies, and the certification is strictly voluntary, because no insurance requires it. LANA certification is a written test, with no clinical (hands-on) component, but it does require proof of at least 135 hours of specifically LE training, two-thirds of it hands-on. It requires some continuing education hours every two years, but offers no supervision of its therapists and has NO WAY to process patient complaints. (Aaaaaaaargh!) So a LANA therapist can be doing nothing but soaking her patients in olive oil and sticking them on a pump for an hour (and I didn't even make that up
), and if that patient worsens (well, duh!) and notifies LANA of the abuses, they will do NOTHING about it. That happens to be one of my pet LE peeves (could you tell?
), but there are so many pet peeves that I get distracted from it. I've argued with them ad nauseum, but they don't seem to see any connection between certifying therapists and making sure they're not damaging us. Ah, well, for now we take what we can get from them!
Be welll!
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Binney - I am having a hard time figuring out how much pressure to press with, do you have a handy thought? The movement I guess. My LE therapist showed me, I showed her but I still don't feel like I get what I am doing.0
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Omaz, the pressure for MLD is just enough to move the skin--if you're doing sweeps you'll see the little wrinkles in front of your fingers.
Go slow: at NatsFan has said beautifully: "Lymph fluid is slow and stupid"--you are moving custard, jello, something thick
If you do stationary circles, be sure to lift your hand at the end of the circle and let the skin release.
The general depth is called "stroking a kitten"--it's light.
Does that help?
Kira
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Yes, thanks.
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SamSue--check out therapist locator that Binney gave you and also check with your insurance to see if the cost is less at other centers: where I live, one clinic gets 400$/hour and my copay was $80, but another hospital clinic, just as good, gets far less. It's all about "contracted rates" with insurers.
Personally, I've been through a number of PT's and some were okay and some horrible, but luckily I found a LANA certified, highly trained LMT, who can not bill insurance, but the $75 for 2 hours is worth it to me.
After going to a "weekend wonder", and Binney set me straight, I've only gone to well trained therapists, but I still struggle with the PT/OT mentality of acute care for a chronic condition.
My primary has been the biggest help for me, and I get all my referrals and garment prescriptions through her: she admits that she doesn't know as much about lymphedema as she'd like, but she's incredibly helpful and kind.
We did write a page for doctors on stepupspeakout
http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm
We try and keep it updated--it's the information we'd like all doctors to know.
Please let us know how you're doing.
Kira
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wow ... $75 for two hours ... I'd pay that in a heartbeat!!!! My LANA certified therapist was $400/a hour. I'm in a pretty rural area ... but that $75 gives me some hope that maybe I can find someone ... I could definitely do that! Pray that I'd find one!!
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Binney--Thanks, you have reassured me somewhat. I like my therapist's personality and she seems to want to learn more. She has read some articles I have given her. It is tiring so try to stay on top of it all. She is fairly close by--one half hour.
Kira- I just read the site you gave above on stepup. I noticed the truncal article is there. I think it is great you all have started that site. It has helped me a lot.
I am going to quit thinking about LE for awhile and go to my Kindle for some pleasure reading. Wish I had a brownie here but am trying to stay on Weight Watchers and have used up my points for the day. But a nice chewy brownie to the two of you for all of the work you have done and the support you give to all. Becky
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Thanks Kira and Binney, I'll go to the site again and do some more reading. I took most of the morning to read this thread and bookmarked the site a couple of times when you referred to something. I also now understand what you said about the light pressure. Thanks for that.
I did check to see about a LE/PT on the site but only spent a short time looking because I wanted to read what was given here...
I'll also check the FSMTA site for my state and see if there is a LMT that would be qualified that lives close. Can you wear the day time sleeve at night? I don't have anything to be able to wrap my arm. I was able to get the sleeve locally but it wasn't covered by any insurance and it's $$$$. The numbers differed from the ones given earlier. It says GR size III CCL 1 Long Does any of this relate to any of your numbers?
Thank you so much for your help!
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Samsue you are not suppose to wear the day time sleeve when sleeping. I am sure Kira or Benny can tell you why.
I am home more exhausted than before I went. I have to brag. I went to Target and I left with out buying popcorn today. I wanted it so bad but I figured with all the eating out I did at my moms, I might look like a puffer fish tomorrow. BUTTTTT I did eat a chocolate bunny. lol
Hope everybody has a great Easter and have a swell free day.
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