GRRRRRRRRR I HATE LE..........

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited September 2013

    More humidity? Yuck. I'm a pretty positive person, but I can find NO silver lining with lymphedema. None. Went to a super simple yoga class last night and now my hand is all puffed out like a pack of wieners. Could it be something else? Salt? Heat? I don't know and I can't figure it out. I do my exercises and self massage everyday, and I keep my arm elevated as often as possible. As well as wearing a sleeve and glove. And even my simple day-to-day routine is resulting in a really filthy glove. The latest casualty was opening a can of tuna for the cat last night, and the oil spilled all over me. Bad enough wearing that awful thing - but worse when it smells like fish. Blech. I rinsed it out so it'll be okay. Wish I cold rinse away my bad mood though. 

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  • Marple
    Marple Member Posts: 19,143
    edited September 2013

    Janet~I'm not familiar with yoga but from reading the threads many of the moves you might try modifying.  Any move that puts undue weight on your arm would be a place to start.  Tuna oil on your glove, how delightful.Tongue Out

    Edit to add the link to this thread.  http://community.breastcancer.org/forum/64/topic/807955?page=1#post_3654515

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited September 2013

    Heat and swell yet again for me too Marple and Dawn - My sleeves feel like they are stuck to me again .. but got to wear them I didn't yesterday and gained 2 lbs overnight even with MLD...

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2013

    I just have to grouch that I have been faithful to the compression shapers, glove and sleeve and this has been the hands down worst uncomfy summer I have ever had grrrrrrrr.  I now am awaiting colder weather which I generally hate. I have been so sweaty under all this elastic. I really want to give out badges to those who live in this climate year round. I hate LE more than haggis, pickled herring and cancer treatment. Sorry I just need to get that out of my system.

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2013

    Hugz, I just need you to know that I rather enjoy haggis.  But I get what you're saying!

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2013

    Ok so it is true LE'rs are really crazy considering some do like haggis. Bah yuk!

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    Oh, Janet, yuk. I don't really enjoy cooking but I enjoy it even less now since I have to wear gloves over my sleeves/gauntlets.. I actually grated my finger through my surgical glove. Chopping is scary because there is extra glove that extends past my fingertips. Even though I wear surgical gloves the compression smells like dinner. Onions are the worst. I can't think of a silver lining to LE, either. I keep busy stuffing my frustration down or I will shriek like a baby!

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited September 2013

    Jeannie - Don't know if your post was supposed to be funny, but I laughed out loud. It's true - sometimes my glove smells like dinner too. Today my glove smells like turkey chili, wet basset hound, and dirt. There's proabably a little red wine in there too. Should I try to suck it out?

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    Go for it, Janet, but I hope you only get the wine!

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2013

    Sometimes it just takes someone who's willing....

    I went today for a blood test at my local clinic. I told the nurse (who has known me for years, so that helped) that it had to be from my foot and explained why. She said she's never done it but was willing to try - and she got it on the first try! Afterwards she was very pleased with herself (which she should be!) and said she was glad she'd learned something new. No fussing, no big deal.

    Leah

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  • TNNurse
    TNNurse Member Posts: 58
    edited September 2013

    Met my plastic surgeon this morning.  She is very impressive.  She explained my two options and both are of course HUGE.  Either using muscle and skin from my back or DIEP.  I am inclined toward the DIEP even though I have had abdominal surgery.  The thought of the other one made me believe that it could really make the LE worse.  I do not have to decide yet.  I have no sick time since the other treatments used it up.  I will probably have the surgery sometime next year and then retire.....so no worry about sick time.   I have seen the work she has done on a coworker, but she had immediate surgery....no radiation.   

    My husband said I left the office looking like I had been hit with a 2X4....pretty much felt like that.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    Hi, TNNnurse. I have LE in both arms and had DIEP 8 weeks ago. At my last LE appt. two weeks ago, both arms were 4% smaller. Not sure I can associate it with DIEP but there you go. Neither surgery is a walk in the park but I'm happy I did mine. I didn't have any complications but about 30% of women do. The ladies on the DIEP 2013 thread can answer your questions. They are very supportive! It's normal to be overwhelmed. It's a big surgery but probably not as painful as you think. Good luck with your decision!



    Leah, you are so lucky! I have had nightmare experiences with needle pokes in my foot. so painful! Doctors can't even get it in my foot. They've been using my neck which is already scarring that vessel. Not good. Of course, now I'm so nervous about it that my veins seize up. Lucky you!

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  • mags20487
    mags20487 Member Posts: 1,591
    edited September 2013

    my ps is a LE specialist also...she will NOT do recon using the back/shoulder tissue as it can indeed make LE worse.  Research thoroughly before making a decision on this as it can definitely have lasting effects.

    Maggie

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2013

    Jeannie, next time you need a blood draw try a hot compress before - I've heard it really pops up the veins. Also, drinkdrinkdrink - the more hydrated you are, the easier to find your veins.

    Leah

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  • carol57
    carol57 Member Posts: 3,567
    edited September 2013

    TNNurse, I had a bilateral diep, and I had had prior abdominal surgery too, 2 C-sections. I had no complications, recovery was what I'd call painful for just a few days, and then 'tender' for a few weeks, and feeling great after a few more.  It was two years ago in July and I'm stronger, fitter, and more physically able in all respects today that I had been for decades before the surgery. Once given the green light to exercise by my PS, I started following the PAL protocol, which helps reduce LE risks or making it worse (I was diagnosed by then). Turns out that at least for me, the PAL exercises were very compatible with the pace and methods that were helpful for returning to strength after a diep.

    It's not the right answer for everyone, but I am very happy I went that route. 

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    Leah, sadly, I have tried those things. :((. If only I could get all my blood draws at the cancer center. They are pretty reliable there.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited September 2013

    Well, I just blew it.... new primary visit today. Still dizzy nauseous and overall not feeling good... BP up and she has decided to do a whole set of blood work feeling I might be dehydrated... I told her I was too weak to fight it I will let them use one of my hand at the lab.. not good is all I have to say - I finally said no when they got to the swollen upper arm... suspect dehydrated - took over 15 minutes to draw enough with tourniquet on..  I am so stupid sometimes... When you don't feel good and have noone to back you up.... it sucks... I don't know if I will ever learn to be strong.

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    GMAFoley, you ARE strong! You have been through so much already. Everyone has weak moments, especially when they don't feel well. I know you will do the massage, the wrapping or compression, drink lots of water and see an LE therapist if you feel the need. It's what we do. God's strength is available to you, too.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited September 2013

    Thanks Jeannie for saying that. Now the other issue...doc wants me to take BP every day... I'm bilateral. What type of cuff do i need for ankle BP?

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    Wow, ankle bp is challenging. My nurses sometimes can't even get a reading. They use a stethoscope to listen to a vessel, too. Your doc can't just tell you to do it without telling you how! Let us know how it goes. I may have to do it, too, someday.

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited September 2013

    I have LE in one arm and at risk in other due to bilateral mast. I only found one person that could do the leg and that was the thigh when I went in for colonscopy last spring. Do the numbers read the same as a arm? I would love to buy a cuff but don't know which kind to get and learn how to do my ankle. Any suggestions?

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    BP on my ankle is generally higher, especially if a machine is used.

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  • jarris77
    jarris77 Member Posts: 100
    edited September 2013

    Jeannie, I have the same problem. My doctor told me to buy a wrist cuff, which I did. Everyone has since told me that they were not accurate at all (even another doctor). The readings were way off. I will be returning it this week. I am anxious to see if anyone has a better answer for us.

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited September 2013

    I found when they do my ankle monitoring, it is usually about 10 points higher than my arm bp - but if it is always that way you can know this and deal with it that way.  Going to see what it does on my ankle.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited September 2013

    I've never measured my own BP (either before or after LE) but before my 2nd mx I had my BP taken first on my arm and then on my leg (just above ankle at shin). It was 115/60 on my arm and 130/70 on my leg. So yes, it is higher on the leg.

    Leah

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  • GmaFoley
    GmaFoley Member Posts: 7,091
    edited September 2013

    Used an automatic arm bp today on ankle. After lunch it was 147/87. The other day in docs office on the wrist it was 154/82. Will keep checking it see what happens.

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  • Linda-n3
    Linda-n3 Member Posts: 2,439
    edited September 2013

    Here is some info on lower extrremity blood pressure



    http://www.medscape.com/viewarticle/471829



    Essentially, BP readings will be a little higher in ankle or thigh, but it is consistently so, so following trends is more helpful than absolute numbers,

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  • Janet_M
    Janet_M Member Posts: 1,068
    edited September 2013

    Good Morning,

    I've got an LE question. I'm not even sure this is the right thread for it - but I'll ask anyway.

    What do you ladies do first thing in the morning when you wake up with a swollen arm & hand? Some mornings I wake up and do immediate fist pumps, or sometimes I wait for a while until I do the whole self-massage. But this morning I woke up and thought 'F*ck it! I just don't wont to deal with it'.

    I seem to spend every spare moment dealing withe BC side effects. Appointments, scars, excercises, fittings, and I'm feeling sorry for myself. I plan on spending the entire moring in my pajames wallowing n self pity. 

    Janet

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  • Marple
    Marple Member Posts: 19,143
    edited September 2013

    Janet~do you wrap or wear a night garment.  If you don't then it would be worth a try.  Do you sleep with your arm well elevated on pillows at night?  That might help too.  It's so frustrating isn't it?

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  • Jeannie57
    Jeannie57 Member Posts: 2,144
    edited September 2013

    Janet, I think I know how you feel. Let's just run away and forget about "It" for a while.

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