Frustration!!

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lamuso
lamuso Member Posts: 123
edited June 2014 in Lymphedema

Hello ladies..... I guess I just need to vent.  I'm in San Antonio TX right now to see my daughter graduate from Lackland Airforce basic training.  We traveled from here from Duluth Minnesota.  I have wrapped, massaged, wore my sleeve dutifully and still.....this big huge arm.  I am so sick of it.  I guess it's really touching home in this warm weather.  I'm used to 10 degrees and long      sleeves so my arm hasn't really been exposed for many many months.  I'm undergoing therapy right now but nothing seems to make a difference.  How do you ladies deal with the self image issue?  I don't like to think of myself as self obsessed or vain but this issue seems to be getting harder to deal with.  I appreciate any thoughts on putting this in perspective.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Leslie, I think it's even harder to deal with LE when you're trying to celebrate like a "normal" person--LE stinks, and you deserve to be able to celebrate your daughter's graduation without having to deal with your arm.

    Here's a link that has helped me, it's from Pat O'Connor on emotional coping

    http://www.stepup-speakout.org/patoconnorcopng.htm

    When you're not seeing progress or flaring, it's really hard. Please don't worry about being "vain"--this is a disease, not a cosmetic issue.

    When you get back to MN, perhaps you and your LE therapist need to re-visit the treatment plan.

    For now: hydrate, stay as cool as you can and enjoy your daughter--and know that we've all felt this frustration.

    Hang in there.

    Kira

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  • lamuso
    lamuso Member Posts: 123
    edited March 2011

    Kira thanks so much for your kind words.  Thanks also for the link you posted.  It helps just having fellow survivors understand how frustrating this can get!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2011

    Oh, wow, lamuso! Congrats to you and DD both!Cool We have a DD who's career Navy, so I'm smiling while I'm typing this and thinking how proud you must be. I hope she'll be wonderfully happy in her Air Force service.

    Goodness, MN to TX -- your poor arm must be so confused! I hate that it's acting up on you, and I so feel your frustration and...well, humiliation too, yes?Frown If you're doing self-massage and/or self-wrapping, under the circumstances it can be really difficult to massage gently and slowly enough and wrap lightly enough. Tension can make us overdo it, with nasty results. Just a thought.

    And I'll add to Kira's excellent suggestions: elevate when possible, and do some slow deep abdominal breathing. 

    Probably doesn't help to say this gets easier with time and experience, but it does. Not much help for this occasion, but just wanted you to know it won't always be as hard as it is this week.

    Hugs,
    Binney

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  • KittyDog
    KittyDog Member Posts: 1,079
    edited March 2011

    ((((((((HUGS)))))))  Sorry you came south to have a flair up.  Congratulations on your DD.  The warm weather is the pits for this problem.  As I told my hubby tonight I feel fluffy in my arm.  What in the world are we going to do this summer.  uggg  more ((((((HUGS)))))

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  • lamuso
    lamuso Member Posts: 123
    edited March 2011

    Binney4.... thanks for your thoughts.  I am still here in San Antonio (currently just returned to our room from the great happy hour).  I wondered what effect the drive here would have on my arm.  We drove a Kia Spectra here to help save with the gas prices and I can't even straighten my arm upright while in the car.  Yes, I'm doing both self massage and self wrapping while down here and I agree I may have gone too tight on the wrap.  I usually use my flexi-touch every night at home and of course I'm with out that too.  Nice to hear your DD is military also.  I have such respect for everyone who serves our country!  I enjoyed the Riverwalk and Alamo today.....it is great being with my daughter.  I've missed her so much!

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  • lamuso
    lamuso Member Posts: 123
    edited March 2011

    I didn't know warm weather can attribute to our issues.  Argg.... in Duluth we are limited to about 2 months of weather above 70 degrees!

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited March 2011

    Last summer's Dallas heat totally got me!  I developed LE in Feb, learned about managing it in April as the heat was kicking up.  I didn't feel like I really got a handle on it well until the heat subsided in November.  Dreading the upcoming increase in temps.  I'm feeling for you.  San Antonio is a fun city, but LE is NOT fun!

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  • Suzybelle
    Suzybelle Member Posts: 920
    edited March 2011

    Hi, lamuso,

     You, your pups and girls are such cuties!  Welcome!

    It's hard, in answer to your question about self image.  I struggled for a year with it and still have my moments but it has really helped me to get into a 'screw them if they don't like the way I look' mode.  I hate to be crude, but this attitude has saved my bacon.  And I've started looking at myself more as an advocate/educator for those folks who don't know about LE. 

    I have nothing to be ashamed of or feel bad about and neither do you.  We are strong, lovely women with lives to lead and people we love.

    Obviously, I'm big on giving myself and others pep talks.  Hang in there, my friend.  Wink

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  • lamuso
    lamuso Member Posts: 123
    edited March 2011

    Suzybelle thanks for the pep talk.  I needed it.  I know I have to get beyond the 'stares' i get when I'm wearing my sleeve out or even the looks (imagined or not) at my swelling arm.  If you just see my LE arm I look like a very top heavy women.  I never really thought about my arms until this happened.  Now I seem to think of nothing else.  I'll have to become an advocate on education people about lymphedema also.  Ha ha!!! as I'm writing this a commercial comes on tv. about a product called "shake".  It's a weight like device developed for women who want to slim down their arms and build muscle.   Which makes me wonder....if it good to lift weights or not?  I've heard conflicting reports.

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2011

    Lamuso, the studies have shown that if weight lifting is done slowly--the protocol is two times a week, with 48 hours between sessions, that it overall did no harm, and some women benefitted.

    They have women start with just one pound weights and a few repetitions.

    Unfortunately, the website of the PAL study says weight lifting will prevent lymphedema--but that wasn't shown in the study.

    We have women on these boards who weight lift--wearing compression garments--and do really well. Others have a problem with swelling when they weight lift. The key is to go slow. And, if possible, work with a qualified trainer who can get the PAL protocol from Dr, Schmitz.

    I bumped up a thread on it for you.

    Hope you're having a great time with your daughter.

    Kira

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  • Warrior13
    Warrior13 Member Posts: 7
    edited March 2011

    All of our arms/legs are badges of honor. We are WARRIORS ANS SURVIVORS. People are much more sympathetic then we think. No one is looking at us thinking ugly word. Do you laugh at people in a wheel chair? blind? deaf? amputee? NO NO NO NO.

     I know its hard and sometimes I have to read my own writing, but as Barbe says "screw em if they dont like it" We have been thru HELL and now its time to enjoy OUR life and not worry about anyone else. Stay surrounded by good people, family and friends. We are a big Lymph Team.

    Everyone smile today and think happy thoughts!!Cool

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  • bingbing
    bingbing Member Posts: 82
    edited March 2011

    Hi Lamuso, I am also from Mn, although a lot more south of duluth. Duluth , by the way is a very nice place to visit. I could not believe how big those ships are in the harbor. Anyway, I have traveled with my le arm,usually going down south,except usually in Dec or January. We seem to bring the cold weather with us, though. Anyway, when in the car I like to do the le wave, as I call it. You bend your arm from the elbow , like the royalty do in a parade and wave about three or four times. When next to a car they must think Mn people are the friendliest people, waving at strangers. Well we tend to be very friendly in Mn so it's very appropriate, don't you think? I also put my arm out in front of me like I'm going to push something away. closed fist when close to my chest and open fist when I put it out in front of me. There should be enough room for both of these exercises, even in a small  car. I do these slowly  and gently about three or four times, in a row,  whenever  I think about it. at least 2 times an hour. My arm has never been a problem when travelling. I also say screw em if they don't like it. We do what we have to do. My staring problem is BOOBS. I think since I have had a mastectomy, with no reconstruction, I have become obsessed with boobs. It is the first thing I notice about a woman when I see one. My husband says " does that mean I can stare too?" Nope just me. Anyway, have a good time in Texas, with your daughter and thank her for her service to our country for me will ya? My son was in the air force about 29 years ago. Ohh does that age me. I am 66 and loving that age. I will have my 5 year cancerversary on May 18 ( date of mastectomy ). and hoping for many more birthdays.  Sharon

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