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All TopicsForum: Lymphedema → Topic: Seasonal Distress Disorder

Topic: Seasonal Distress Disorder

Forum: Lymphedema — Risks, tips for prevention, and info about products that can address the symptoms of lymphedema.

Posted on: Apr 20, 2010 10:08PM

lionessdoe wrote:

Sometimes lymphedema feels like my life has been turned upside down, backwards and inside out. I look forward to rain rather than enjoying the sun worshipper I used to be. I am dreading summer rather than looking forward to it. It's like even the seasons themselves have evolved into something I don't recognize in the same way. Adjust! Adjust! Adjust!

Avoiding the sun is so not me. But the heat just makes everything worse. Thank God for Air Conditioning!

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Apr 21, 2010 07:25AM kane744 wrote:

Luckily, I stopped worshipping the sun years ago when I turned 40!  I like sitting out on our deck, however, which has a retractable awning.  My main concern now is mosquitoes.  They adore me, every single one of 'em.  I guess I'll take to spraying yard guard before I go out.  We have an "annual" vacation scheduled, which we haven't taken since I got bc.  But this year we're going.  A bunch of old friends from our San Francisco days meet up for a week of pretending we're still young.  It's on an island in North Carolina.  Inevitably, an hour or two after arrival, my ankles swell and I'm wondering if this will translate to my le arm as well.  Hope not.  I will take an extra carry bag just for my le supplies.  Am not even gonna take a bathing suit.  Received my Sun Precautions top yesterday.  In a few weeks I'll order a few more things.  My dh wonders how I manage to turn every bad thing that happens to me into a shopping experience!  I tell him it's a coping skill.  Anyway, I agree, thank God for air conditioning! 

Dx 9/26/2008, IDC, <1cm, Stage II, Grade 2, 0/14 nodes, ER-/PR-, HER2-Dx 5/2012, IDC, <1cm, Stage I, 0/1 nodes, ER-/PR-, HER2-Surgery 06/26/2012 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left); Prophylactic Mastectomy (Right)Chemotherapy 08/01/2012 Cytoxan, Taxotere
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Apr 21, 2010 07:31AM Suzybelle wrote:

Kane, you made me snort again!  Love that line about bad things turning into shopping experiences...I have that same talent. 

Dx 1/27/2010, ILC, <1cm, Stage I, Grade 2, 0/10 nodes, ER+/PR+
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Apr 21, 2010 10:14AM kane744 wrote:

Gill, I am recently diagnosed.  April 1 if you can believe that.  They got me good,  The dr said I probably had it awhile before I noticed it.  I thought it was old lady arm flab due to the 12 pounds I gained during treatment and can't seem to shake.  I have some good days; then some days where I just melt down and curse this blasted thing.  Right now I'm having a good day cause I got my garments yesterday.  I got my sleeve on pretty easily but with enough effort that I considered it an official exercise.  The gauntlet isn't bothering me yet today.  I feel so grateful that I only have to wear those bulky bandages at night.  Today I have on one of my favorite tops that I usually only wear when we go out.  I can fit into it again!  Thank you sleeve.  I ordered one My Sassy Sleeve to see how that goes.  Have you seen them?  It's a cover that goes over the sleeve.  Go online--gorgeous.  So, Gill, it's OK to feel resentment at times.  I'm sure a lot of us do.  Like I said, today I'm having a good day.

Dx 9/26/2008, IDC, <1cm, Stage II, Grade 2, 0/14 nodes, ER-/PR-, HER2-Dx 5/2012, IDC, <1cm, Stage I, 0/1 nodes, ER-/PR-, HER2-Surgery 06/26/2012 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left); Prophylactic Mastectomy (Right)Chemotherapy 08/01/2012 Cytoxan, Taxotere
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Apr 21, 2010 12:31PM kira wrote:

Kane, you're sounding good!

Gill--I think we all struggle with the resentment. Binney says it's a grieving process, but I think it's a combination of so many things: being a member of a club you never wanted to join, having a chronic reminder of breast cancer, having to DEAL with it and factor it into your life. Yes, other people have chronic conditions, but LE involves shame, having to often fight for treatment and so much lack of knowledge.

I go out and look around for other women wearing compression garments--where are they?

I saw a woman with a compression glove on the other day, and I wanted to hug her.

I used to love summer also, and now I cover up, avoid the sun, hide from bugs.

Gill, you have every right to resent LE.

At one point I pm'ed Binney with the heading "I hate LE, chapter #"--and the chapter numbers got pretty high.

On the stepup sight there's a link to Pat O'Connor's emotional responses to LE--I'll link it when I'm on my own computer.

Kira

Knowledge is the antidote to fear, Ralph Waldo Emerson

Dx 5/10/2008, IDC, 1cm, Stage Ib, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Apr 21, 2010 12:52PM Binney4 wrote:

Here's the link Kira's referring to:

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

Gill, I'm six years out from the LE diagnosis, and there are still those days (sometimes more than daysEmbarassed). But eventually the resentment and frustration does recede enough to let you live your life. I love your choice of the word "resentment." Why shouldn't we resent this? Makes sense to me.

Big hugs anyway,
Binney

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Apr 21, 2010 10:39PM sisterinspirit wrote:

Doe,

When I saw the title of this thread, I was thinking seasonal affective disorder, like in the winter.  But you are so right, seasonal distress disorder.  SDD, that's what I have.   Summer used to be my favorite time of year, but going into my third summer with LE it's really hitting me, all of the adjustments I have to make. Yes, resentment. 

live well

Dx 4/9/2008, IDC, 1cm, Stage Ib, Grade 1, ER+/PR+, HER2-
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Apr 23, 2010 01:20AM kcshreve wrote:

Frustration is a big word for me regarding LE.  What will I wear? depends on what's going on with the LE.  What to do about surgery? - depends on what's going on with LE.  What time do I need to set my alarm?  depends on my getting enough time for the LE work.  On and on.

Bilat NS DIEP Jan 2010, LE Mar 2010

Dx 12/2009, DCIS, 2cm, Stage 0, Grade 1, 0/7 nodes, ER+/PR+
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Apr 23, 2010 08:57AM kira wrote:

We should keep track of the words: resentment, frustration, shame--even anger--not a whole lot positive here, and that's real.

Which is likely why Bright-Sided appealed to us who are dealing with this.

How to put a positive spin on LE? It's tough: it's all relative--like "It's under better control"

There are amazing women on these boards, and that's positive, but the resentment and the frustration and the fear--fear of provoking a flare, etc--are all real and honest responses/emotions to LE.

Kira 

Knowledge is the antidote to fear, Ralph Waldo Emerson

Dx 5/10/2008, IDC, 1cm, Stage Ib, Grade 2, 0/3 nodes, ER+/PR+, HER2-
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Apr 23, 2010 11:05AM kane744 wrote:

How 'bout this one:  "It could be worse."  Huh??  One of the worst things for me is having to be constantly aware of everything I do, lest I cut myself, burn myself, etc., etc..  I hate that.  Am having one of my "off" days. 

Dx 9/26/2008, IDC, <1cm, Stage II, Grade 2, 0/14 nodes, ER-/PR-, HER2-Dx 5/2012, IDC, <1cm, Stage I, 0/1 nodes, ER-/PR-, HER2-Surgery 06/26/2012 Mastectomy (Left); Lymph Node Removal: Sentinel Lymph Node Dissection (Left); Prophylactic Mastectomy (Right)Chemotherapy 08/01/2012 Cytoxan, Taxotere
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Apr 23, 2010 11:59AM sisterinspirit wrote:

Kane,

Sorry to hear you are having an off day, but go for it, that's real too.  For the newbies, I would like to add that as Binney and Kira have said many times, learning to manage and control your LE gives you your power back and you can move on with life.  The emotions expressed here are very real and just part of the package.  Kane, go treat yourself to something nice!

live well

Dx 4/9/2008, IDC, 1cm, Stage Ib, Grade 1, ER+/PR+, HER2-
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Apr 23, 2010 04:59PM OneBadBoob wrote:

Oh boy--huge sighs here. . .

Some days I keep telling my self it could be worse, and indeed, it could be, and other days I am angry, rant, curse, etc.

I guess it goes back to that thing of our getting to the point of accepting our "New Normal."

I actually wrote "My story" for the Journal of Lymphedema out of London, and it made me feel much better just to have written it all down!!

Onward ladies!!  There is life after LE!!!

Jane - Dance as if no one is watching!!

Dx 7/7/2007, IDC, <1cm, Stage I, Grade 1, 0/2 nodes, ER+/PR+, HER2-