GRRRRRRRRR I HATE LE..........
Comments
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Ducky--I was wondering. Did the fitter measure you sitting up or lying down? My loose skin moves down when I am sitting up and my therapist measured me both ways. Since I will be sitting up wearing the sleeve she felt those measurements would be more accurate for a fit. Plus she took pictures of my arm for the whoever was making my sleeve could see. She also measured me in more spots than the form called for. I can only get the sleeve on if I keep my arm down. If I hold it up I cannot get it all of the way up because of the skin location. I do hope you have more luck this next time. The freedom from wraps is fantastic. Becky
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Becky . she measured it sitting down.......the first time she put saran wrap around the upper part of my arm.....that sleeve came in too long from the wrist to the elbow, but ok from the elbow to the shoulder....................the 2nd time she did not use the saran ............when that sleeve came in (which is the present one) it was ok, from the wrist to the elbow, but was too short from the elbow to the shoulder.
Made a phone call to her yesterday , got voicemail, so I'm sure she will not be happy when she retrieves her calls today...............but then again........I'm not happy either.............the saga continues....................
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Ducky--Glad I am NOT the recipient of that voicemail. This makes me soooo appreciate my therapist. She is also my fitter and is so careful. I did have to have my first sleeve lengthened a cm but she did all of that for me. She did say she always is so relieved when a garment fits right as they are very difficult to do so. Becky
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Becky........my therapist is great........the reason she didn't want to measure me (which she does each time I go)..................in case there was an error (as there was) she felt the company would deal better with someone who sends them a lot of business, as opposed to a person who send them occassional business................
The measurer, right before I went to her, had breast surgery, chemo, rads, and then another surgery for breast implant infection.................maybe her head just was not in what she was doing...........but then again..........if it wasn't..........she should have taken more time off, and just said "I can't do this for you right now"............... would have gone somewhere else.
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I am seeing my therapist for the first time next friday. Is there anything that I should plan to ask while I am there?
I am just getting over an elbow injury to the arm with LE go figure right?!! It is still really sore but improving so hopfully by Friday it will be mostly better.
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Keri, here's a link to the NLN position paper on treatment--some therapists kind of pick and chose what they'll do, and it's good to go over the paper with her and figure out the plan. I think the ideal is to learn MLD, exercises, get compression garments and learn how to wrap, and then you figure out which of these things you need to control the LE
http://www.lymphnet.org/lymphedemaFAQs/positionPapers.htm
Here's a llink on stepupspeakout on therapy:
http://www.stepup-speakout.org/treatments_for_lymphedema.htm
There's a pamphlet on that page that can be helpful.
Kira
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I've several questions about flying. I'm sure there are other threads and I haven't searched hard to find them ... but if I should look somewhere else, or if I should ask this somewhere else, let me know & I will.
I AM SO SCARED TO FLY!
I flew a lot prior to BC, overseas and across the U.S. I haven't done it since my surgeries. I want to visit a friend in FL over thanksgiving but I am so, so, scared! I don't want my LE to progress, I don't know how to wrap and would love to do it for flying but I don't know how. I have gloves & sleeves but I've found over the summer that I wear different types of compression on different days. When it's really hot ... it seems the less compression the better. When I'm working out ... I wear tighter compression. It really doesn't make sense to me ... but I'm learning to listen to my body and do what needs to be done to help with the swelling. Because I haven't flown with this condition ... I don't know what to do. When it's hot I wear my isotoner therapeutic gloves and my silverwave sleeve. When I work out I wear my mediven gloves and jobst sleeves. What sleeves should I wear when I fly?
I know I should drink a lot of water, limit my lifting, elevate when possible ... but I'm soooooo scared that my lymphedema will get worse because of flying ... that maybe I'll start swelling somewhere new ...
Any ideas or suggestions? Less or more compression on my fingers and arms? Should I wear a compression shirt? I wear one when I work out?
Any tips, ideas, suggestions, or encouragement would be useful.
I.am.so.scared.
I don't want to get worse because of flying ....
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Deb, that nerve distribution you're describing sounds intercostal brachial to me. http://en.wikipedia.org/wiki/Intercostobrachial_nerve
(second intercostal) see if you agree.
The question harder to answer I would think is why now if you haven't had problems before. Usually people complain about it righ after nodal surgery. Unless the nerve wasn't bothering you before and is getting irritated or stretched now, or, was only mildly hurt before and is regenerating some. Do you have truncal edema acting up that could be irritating it?
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As you can see from my typing, I was fitted with a glove with finger stumps (should have been long before but we'll just concentrate on how much better the new LE therapist is and not get into that). Hand is doing better, but, I'm finding it interferes with a whole lot of the coping mechanisms I had found for the neuropathy. I feel like someone has my hand encased in lead all day. When I'm working on things at work where I have to be efficient and type well the first time around I have to take it off. Which is going to be in about 5 min now when I get back to what I really should be doing.
I don't know, you're talking to someone who usually Purell's and/or washes their hands from one to 5 times an hour on some days (other days a little more normal) depending on what I'm doing and how much I'm in public. This glove and I are not enjoying a loving relationship right now.
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Dawm-Hope: I totally understand your fear--I didn't fly for almost 2 years. I did fly with a night garment: Solaris, and it worked out just fine. I limited my first trip to a couple of 2 hour rides.
Earlier this year, I took a longer trip, around 5 hours, and because my hand was acting up after the fracture, I flew wrapped, which meant I got to board first...
Seriously, I was terrified, but my LE therapist supported me going wrapped, or the night version of wrapping. Some women do fine with compression garments--I just opted to wrap or night garment.
It's very, very liberating to fly again.
Kira
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Thanks for the info. I will print off that paper and be ready for Friday. I just want less pain!
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KMMD: somehow I missed that you are dealing with a new glove--and a new therapist. Very tough to wear gloves when you need to wash your hands a lot, and I'm sure the decreased sensory input doesn't help the neuropathy--but they sure do help the swelling.
Hope you and the glove are getting along better.
It's a marriage of convenience...
Kira
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My mom went today to the therapist and she is wrapped from shoulder to hand and will go back Wed to get re-wrapped. She said that around her elbow was where the swelling was the worst 1-2 cm larger. Therapist said that she is in the early stages. hopefully the wrapping now and sleeve later will keep her LE under control.
Sheila
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Oh, Sheila, that's good news! I'm looking forward with you to quick control and easy management on-going.
How are YOU doing with this? You must be so discouraged to see your mom dealing with this now too. Brownies to both of you!
Binney0 -
Just wanted to let you know that pain in upper arm is mucn improved from last week. The LMT thought that there may be a referred pain situation going on since the MLD wasn't helping so he did some soft tissue work and voila! I have been very hesitant to let anyone touch the affected quadrant for fear of making things worse, but this time glad I did. Now I'm back to MLD with better results. Never thought I would be glad about that! Thanks Kira & Binney for your help!
Deb
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Thanks Binney, Mom has been asking me questions all weekend and today on how to do normal things with her arm wrapped
and other questions on how to help keep the swelling down. We are working through this together. I actually wrapped my hand on Friday night just to remind myself how to do it and I didn't do a half bad job considering I hadn't wrapped in over 6 months.She said she needs her hair washed tomorrow so she said she will call the community college to see if she can go in to get a wash and style from the cosmetology students. They always need the experience and don't charge a large amount to do it.
Sheila
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Deb, I'm so glad it's better. I got a bit of a frozen shoulder this year, and the PT, who is trained in LE--not fully trained, but aware--did myofascial release on my shoulder and chest area, and it really helped, and I think it helped my LE.
Sheila--did Binney send you the link to coping with a wrapped arm?
You both deserve hugs and brownies and a LE stinks tee shirt.
Kira
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sheila, i'm so glad your doing better, and praying your mom will get the situation under control quickly. she's so lucky to have you to help her learn to cope.
i really want to again, thank Kira, and Binney, for their steadfastness in taking care of all our questions/ concerns. i don't know WHAT i would've done, otherwise!!!good to see all the swell sisters i have here!,.......3jays
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I too want to thank Kira and Binney for all the help you give all the sistas (me included)
I do send sistas over from the after rads thread as you girls are the pros.
God bless you.huggggggggs K
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Thanks for the kind words, 3jays and grannydukes. I learn so much from all of you Swell Sistahs, and I'm so grateful for the company!
Binney0 -
Thank you both: I often feel like "bad cop" to Binney's "good cop"--or maybe her evil twin?? She's a hard act to follow--the kindest, most patient person out there.
Sometimes we talk about "is there something wrong with us" for sticking around these boards: but in my case, I'm just trying to repay and pay it forward for the help I got when I got LE. Binney and this board got me through a really tough time when I felt abandoned, scared and horrified.
Now LE still stinks, but I think the women on this board are just plain amazing.
Kira
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Hey Binney and Kira---there is NOTHING "wrong" with you. You took your situation and became an advocate to help others in the same situation. Your input to all of us has been invaluable. I think many of us would be devastated if you left the boards. And Kira we need a "bad" cop to advocate for us so keep your big guns out!
I thank you for all of the support you have given to me. Becky 0 -
Thanks Becky! Thanks to the advocacy work, I just got elected to a national organization that deals with LE's board--although they were suspicious that I was an "LE activist"--Binney laughed so hard. I am an LE activist, but I won't wear my LE activist tee shirt (blue butterfly with a slightly swollen clenched fist) at the meeting. It's actually an honor and I get to meet some amazing clinicians and pass along the info here.
Kira
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Kira--that is great! Congratulations!!!! Progress in the LE world moves so slowly maybe we should all become LE "activists". Becky
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I told her she couldn't wear her "Patients First!" baseball cap to board meetings either. At this rate she's going to have to go out and buy a whole new wardrobe!
T-shirt and baseball cap or not, I'm excited for all of us because we're being represented in a new way. Congrats, Kira!
Binney, doing a happy dance
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Leah, am I right your recent scans were stable? HUGE, HAPPY HUGS!!!! I just love good news, and that kind is the best.
(Hmmm, with all this happy-dancing I should be able to shed a few pounds...)
Continue well!
Binney0 -
I like the "Patients First" cap and shirt!!! What should she wear? A shirt that says "Bring on the Swellulitis?" Where is common sense? We've got your back Kira! Becky
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Kira--the best advocate I know...where would the sistas be without you??????
I too try to pay it forward with all the info i know about bc in general...and I do but i dont know enuf to be called anything but helpful....
Thank you again and a big congrats.....you show them!!!!!!!Good luck and God bless.huggggggs K
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Yes, Binney, scans were stable! Just everyone remember to wear your garments when you join me for the Happy Dance 'cause we're really gonna dance!
Leah
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GREAT, GREAT news Leah! A lot to dance for. Becky
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