GRRRRRRRRR I HATE LE..........
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Whew! This thread moves too fast for me!
Forgive me for answering posts back a page or two, but I'm just catching up with y'all...
Dawne-Hope, I love the cool smoothie idea for your warm bath. The point is to keep your core temperature from rising, so maybe that would be enough to do the job--at least at long as the smoothie holds out! I'd given up hot baths forever
, but I just may have to try that and see what it does. Thanks!
Hugz, the issue is not really whether you're "allowed" to use a hot water bottle, but what it does to YOU, since we're all different. When you've used the hot water bottle on your lower back, how did your LE fare? If no problems, then that's a "go." If you didn't have LE and were trying to reduce your risk, we'd all want to say, "Don't risk it!" But once we have LE and know how to get things back into control if we flare, then we at least have the freedom to try these things out. Let us know what you discover!Be well!
Binney0 -
Great news, GMA!
HugzI will sure search for that thread.
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Girls I have emailed Underamour stating to have a look at the UNDERAMOUR THREAD I created. You'll want to post soon if you want truncal tees as they should be viewing my emaill and sending me a response within 48 hours. Tell them what you want and let them know how great there compression wear is for your LE. Oh I hope this works this time. No grrrrrrrrrs yet!
Binney, Thanks, I have been experimenting with bath. I usually lay on my non LE side and enjoy that hot water then expose the le side to the air. No ill effects yet but I try not to bath often and maybe 15 minutes only. Hot water bottle seems to be OK on my lowerback, I keep it real low hoping that it misses the affected quadrant. How far does that quadrant go down before the ingunals kick in? Or do they not help out the quadrant. I don't know, just thinking out loud here.
Oh I have a infared sauna that sits there begging me to come in and I don't dare. Ok here is a grrrrr for no saunas.
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Hugz, the "watershed" line for the upper/lower quadrant is your waistline. Kinda like chicken quarters, y'know?
Binney0 -
Binney, Ok so that would include my lower back. Drats, because I was easing my pain in my hip and back, remember I was complaining about it in the KICK butt thread last summer. It is at least one or two disc bulges that affect my sciatic nerve hence the hip pain. I'm learning new strategy's to live with it.
A golden doodle pup might cheer me up
Binney, Please, could you check the thread here that is titled WORRIED.
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saw therapist today and she wrapped the left arm. the went to hbo and after that blood pressure was way up 189/78 and temp was 100 now I am home and therapist said to take off wrap and ck for cellulitis but thank goodness no signs of that. Must just be a cold/flu..let's hope it passes quickly cuz cannot do hbo if sick
Maggie
oh gma your post made me smile...maybe it will be gone completely in the next couple of weeks 0_0
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Thanks for the suggestions ladies. I actually did wear my sleeve to work today. No one even asked me about it actually...but I also had long sleeves on. Sometimes I think my sleeve makes my swelling worse though. It's just strange...
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Good for you, Melanie!
I have learned (here ) that some people are ' compression sensitive". I would keep a little log and see what changes you notice. Who knows ?0 -
Binney - I also make enough for the smoothie to fill two large glasses, I use frozen fruit, keep my arms out of the water, use warm instead of hot water, and only sit in it for twenty minutes. When I soak in the Epsom salt I find that the swelling actually is better after the bath than before. I hope it works for you!
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Really, Dawne ? Epsom salts ?!!!
Interesting.
I should post on this hread also ( since I have bemoaned here so much ) that I have an appt with a GREAT LE therapist next week. Kira helped me to find Kathy Fleming ( you can google her) and though she doesnt accept iNS her price was okay. I am psyched !
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Purple, I hope your expectations will be more than met! Wishing you good luck!
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Thanks, Dassi. I am very hopeful, and I will be sure to report back to you ladies !
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Good luck Purple! As always, thank you for the information Binney. On vacation last summer, I got in a hot tub, but kept my arm out. I had a flare up any way. I guess now I understand why. I thought it was just my arm that couldn't be in hot water. I do miss hot baths as well. Warm is just not the same. Ah, but chocolate does help.
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Thanks, Kay!
There is so much that is never FULLY explained ....Thank goodness for Binney and crew!0 -
I spent Oct 2010 to April 2011 going to different LE therapists and trying different garments and finally found the best of both and was able to get the LE under control. In March of this year, I had LD flap reconstruction and my LE improved to the point where I only had to wear compression sleeve and glove during exercise or yard work. On September 17th, I started a new job and went from working 3 - 12 hour night shifts to 5 - 8 hour day shifts. I thought by going to day shift, I would be doing my body a big favor and it has done nothing but wreak havok on the LE. The first week on days my arm swelled an inch larger than my good arm and it has gotten progressively worse to the point it is hurting so bad that I had to call in sick yesterday. Four hours into my shift and my arm feels like it could explode. When I was on nights I was up and down and was able to sit part of the night and elevate my arm on the desk while I charted. At my new job, we rarely get to sit except at lunch. I am so depressed. It was so nice not to have to wear the compression garments this past summer. I talked to my supervisor and Human Resources. They are offering to let me cut back to 2 shifts a week. I have asked to transfer back to my old job as I would rather feel tired all the time than deal with the arm swelling and pain. The only time it doesn't hurt is when I am in bed. My co-workers and my boss don't seem to understand lymphedema. They are telling me to sit down a minute here and there. I truly feel working even 2 days a week will still keep it flared. Has anyone had any similar experiences. Any advice will be appreciated.
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Nurse. Oh I am sorry for your troubles. I find if I have an equal balance of sitting and standing then I am Ok and walking keeps the truncal in check. If I lean back into my chair and don't move while computing I will get pinchy and stingy towards back of armpit. It think it builds fluid when I am leaning back in the chair. It feels like a rubbery egg was put there and uncomfortable.
The arm thing you have sounds unbearable. Sounds like you need a LEist to do MLD again.
Try the Tai chi Breather I posted a couple weeks ago. It helps pump your major lymph area. It is so easy to do and only 5 minutes a day total in 5 sessions. Going to do it now.
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Nurseronda10, I am so sorry that you have had to ensure such a horrid boomerang of your LE. If you want to suggest some reading to your colleagues, PM me and I'll arrange to get you a pdf of a self-study course about LE, designed exactly for nurses. Sounds like they have an LE education gap. Anyone else interested, just PM me, too.
Carol
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Did anybody else get a promotional email from BandagesPlus and find the title little darkly humorous?
Here I am wrapped because I'm swollen from my recent cellulitis, thinking I need to order some new wrapping stuff , and I get an email from them "HOLIDAY FASHION SALE."
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I hate this. We got a brand new piece of equipment at work...
and I had to wait around and watch other people set it up. My favorite part of my job was being the first to play with the new toys... stupid LE.
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Cindy you miss putting together toys like I miss digging up old bones (archaeologist/osteologist)... It makes me sad when I see another arch job go by on the shovelbums e-mails... I guess it is time to unsubscribe.....
Another Bummer bummer: I wore the Bali comfortshaper tank last night and a semi-compression tee over it but when I went to put on my sleeve for work this morning, I noticed the upper arm and shoulder is more swollen than it was yesterday... The torso, breast, ribs seemed down this morning but that upper arm .. oh man!
Another lesson learned.On a good note: It could be worse ... we are all blessed to be here and enjoy our families for the holidays....
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Gma, I knew I liked you.
I work at the SD School of Mines. Some of my best friends spend their time digging up old bones. Always looked way too much like work to me, but they seem to have a good time.0 -
I always wanted to dig up bones!
Did you do MLD before going to bed? If not try that and do some extra on the arm. I woke up swollen under the arm this morning from my tribute. Slid down some and was cutting into my arm. I guess it was cutting the movement of the fluid. grrrr.
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Cindyl. Your equipment reminds me of a cricket standing on its hind legs holding a TV. I am sorry you couldn't play with your cricket.
How did your move at work go, your the gal aren't you?No grrrrs for me today so I will grrrrrrrrrr for all those that can't post today. GRRRRRRRRRRRRRRRR. They can thank me later.
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Yeah that's me. We are just getting started. Cleaned out the scanning room and my storage are today. Our students finished their finals today and winter graduation is tomorrow. Then the fun really starts we will be carpeting 2 floors of the library (about 50,000 sqr feet) supposedly there will be moving crews to move all the shelving and furnishings and we will just need to point and say "that -- over there" and get things sent back to the right places, so maybe it's doable.
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well the left arm is wrapped up again, lets hope the swelling in the hand is gone soon...grrrrrrrrr
Maggie
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Talked to my LE therapist today and she thinks I may qualify for a pump. Does anyone have one? Also good news as far as work goes, I will probably get to take an intermittent leave for a month then go part-time.
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Nurserondad - I have the FlexiTouch pump. It is easy to use and works for me. I used it daily during radiation and then 2-3 times a week or as needed. Would do MLD before and after pump use. I didn't have any LE trouble during radiation (thanks to prayer and the pump) and that thing really helped me during the summer heat when my arm just wanted to swell.
I took it with me on work trips but it never came out of the suitcase. In fact, It has been in a suitcase since Septempber. My arm is just really happy with the cooler weather. So - - I don't use it regular but I use as needed.
It is relaxing but it is an hour+ treatment. It is not cheap ($4000ish) but my insurance covered 100%. I know I will be pulling that out again when the weather heats up. I'm glad to have it. If you can get one I would highly recommend it. It is a nice addition to the LE routine. It doesn't replace exercise or MLD but it did give me that extra help I needed.
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Ohio4me - so glad to hear that it works for you. I am very anxious to get one.
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Where do I begin?
I am having a real pity party here, and I need support. The toughest part is that I think I may lose the best support group have ever had because I doubt anyone can really relate to this .Saw my cardio dr. today due to my very low BP and icy feet etc ( neurocardiogenic syncope) and I explained that with my LE I stopped the salt loading so I know my already low BP has dropped even more. I feel awful. I can tell. I wouldnt let him take it because I feel some symptoms in my 'good ' arm and amazingly he understood. He didnt think it was paranoid at all and even said he would be surprised because in all likelihood, I probably GOT the LE due to my circulatory disorder which is systemic of course. I had pretty much determined that as well.
He offered me midodrine to bring up the BP but I pointed out that was a vasoconstrictor, and my cardiac output might not be good enough ( he will order an echo). I told him I was thinking the same thing about butchers broom and herbals , but they too are vaso constrictors. I desperately need something that will improve my cirulation without exacerbating the LE. Salt was my friend and now it has turned into my biggest enemy.
I skipped rads, armidex, tamoxifen .... I wish I had never touched this BC. In the end, he agreed I might have been better off !!!!!!! I even wonder if my sleeve could be impeding my blood flow. He's not sure.He suggested maybe my (great ) new LE'ist might have some answers, but I doubt it. I'm guessing she sees ppl with LE - not cicrulatory disorders. I am feeling like I am on an island right now, and just waiting for a stroke or a heart attack, with nobody to help me.
Is there an herbal I can take to improve circulation that will not aggravate my LE? I have been searching and searching , but they are vasoconstrictors. I ordered GSE, but I have a feeling I will be giving that away . A broader search reveals it lowers BP.
I feel like I am living in a nigthmare of Catch 22s with no hope for help.
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purple - so sorry to hear of your problems. I think that if your LE T doesn't know the answers, she might know where to look for them, or who to ask. Joachim of http://www.lymphedemablog.com/ has answered my questions before - also might be able to find out who to ask at http://www.stepup-speakout.org/ I think that there must be someone out there that's dealt with this before. You're in my prayers.
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