Lymphing Along.

by

subtitle: a weekend treat from one of my favorite bloggers.

POD (she took the name from the movie/story ‘Invasion of the Body Snatchers‘) loves to laugh, write, read and can often be found working toward discovering (some sort of) authenticity.

She started her own blog almost a year ago where she tries to use humor (MizFit note: she wrote this. Id say she SUCCEEDS) to help ease the spiritual suffering that sometimes comes with illness. She is a force to be reckoned with, determined to kick any illness in the ass before it kicks hers. She is a woman of size, (not too big, not too small), a self-described food addict and a wonderful person if she does say so herself.

 

I’m going to get serious for a moment because October is National Breast Cancer Awareness month, and arm (and truncal) lymphedema sometimes go hand in hand (ugh!) with breast cancer. Though current breast cancer treatment methods seem to be helping lower the risk of getting lymphedema.

I want to know when are they going to have National Lymphedema Awareness Month? What’s it going to take to make the public aware of this condition that’s so closely related to cancer surgery? To help spread the word, do I have to let the swelling in my legs become worse so the public will stare at me and wonder WTF!?! And then I can explain what the condition is? Maybe my butt will become a walking billboard…(never mind).

To be fair, there are Lymphedema Awareness Month(s) in the states of Connecticut, Nebraska, Virginia, and then (leave it to) New York (who) threw a monkey wrench in the whole awareness-month-idea by listing Oct 17th as New York State Lymphedema Education and Awareness Day (though the last citation I could locate for that date was in 2002 – guess the idea of awareness sort of died [no pun intended] down since. Then again, maybe everyone in New York State knows about lymphedema and doesn’t need any more education and awareness.) In all states celebrating lymphedema awareness the actual awareness month is March, which makes total sense to me because I was born with lymphedema in the month of March and ultimately everything revolves around me.

I have primary (meaning born-with) bilateral (meaning both legs) lymphedema which is somewhat rare, though many people get lymphedema as a result of surgery, and then mostly cancer surgeries. Anytime the lymphatics are disrupted, the result can be lymphedema. I tried to ignore my own lymphedema but when you ignore lymphedema it only becomes worse (bigger) and sometimes worse turns into infection and infection can turn into death if the infection is not treatable. It took me close to 50 years to understand the concept that someone had to do something to take care of me and only a few moments to realize that someone better be me. I’d sort of psychologically cut myself off at the waist and hoped no one would notice; yet the irony in this (for me only) is that the bottom half of my body is the biggest half and not something that goes easily without notice. But you won’t see any pictures of my bare feet or legs on this blog because ewww. Two years after finally acknowledging I had a bottom half, and making a decision to take care of that bottom half, and honoring my decision came a uterine cancer diagnosis, cancer surgery and lymph node removal.

Managing lymphedema takes time. Patients might get a form of massage (known as manual lymph drainage), use compression pumps, use compression bandaging and visit clinics. Exercise and diet are vital as is attending support group meetings. It’s really a full-time job (which is why it took me until mid-life to decide I had to actually start taking care of myself — after all, I was busy doing other things, working, raising kids, pretending that I was fine). Lymphedema requires a lot of dedication and a very motivated patient. Anger helps too. At least anger helps me with my own motivation.

I was wondering if any celebrities (other than  myself, of course) have lymphedema? I know Elizabeth Edwards has it (probably got it when John cheated on her!) but she’s not a real celebrity. Does she attend a lymphedema support group in her area? And if she attends, is she sitting next to other famous or quasi-famous celebrity types or regular people? Or does she stay home and pretend she’s fine (like I used to do)? I’m thinking she stays home because we don’t hear or read much about her lymphedema though it would be swell (did I actually use that word?) if she felt well-enough with her own cancer and lymphedema diagnosis to go on the stump (so to speak) and bring some much needed public awareness to this disease.

In my research for celebrities with lymphedema, I googled Sheryl Crow, a breast cancer survivor and found no connection. I googled Christina Applegate because I heard she had her breasts removed and found nothing. I am beginning to wonder of all these famous folks that “come out” about their assorted cancers so courageously, who among them is hiding their lymphedema from the public eye?

Then I wondered if I were a celebrity how would I hide my biggest parts? Make-up? A stunning red carpet gown? Permanent voice-over work? If I had breast cancer (or any cancer) and resulting lymphedema, but didn’t want anyone to know I had lymphedema because of the stigma attached to the illness with swelling and deformity, what would I tell my fans? What would the article in People magazine read? What kind of treatment could I afford if I couldn’t afford to let it be known that I was being treated?

After living with lymphedema for my entire life, I am finally a compliant patient. If you have lymphedema, don’t feel sorry for yourself for too long because it’s easy to fall into the woe is me dumpster. Learn to be compliant. Educate yourself and be angry if you want. You can use the anger to rally against the disease and not let lymphedema become who you are. But most importantly, don’t let lymphedema become the biggest part of you (please click to her site for pictures/the rest of the story…).

Thanks, POD.

Ive gotta say it again: I love this woman.

She’s smart, snarky, funny, insightful and strong.
What can I say? She’s one of us.

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Comments

  1. I have never heard of lymphedema. Thanks for enlightening me. I love your blog and your writing style! I have added you to my roll and look forward to reading more about you.

  2. I had no idea about this- wow. I love the idea of using your anger to rally against the disease- that is powerful stuff right there.

  4. I did know – but I am so glad you wrote/posted this – because I do not think that most people do know. Awareness is good.

    I had a friend with breast cancer that developed lymphedema in both arms/hands – used to sleep with her hands/arms tied to the headboard and used the ‘squeeze machine’ to help too. It was such a struggle for her to keep the swelling down – even a little bit.

  5. I also must admit that I’ve never heard of this. I’m so glad that you wrote this and are spreading the awareness! Thanks so much.

    Interesting questions regarding the celebrities- sad, though.

  6. bigbig thanks to POD huh?

    I knew my great aunt struggled with this but not how common it truly was until she suggested she did a guest post on the topic.

    M.

  8. I’ve been reading Thufferin Thuccotash for a while and always wondered where the name POD came from! Thanks SO much for this guest post.

  9. Very informative… what a strong woman. And we can use what she wrote… “use the anger to rally”… about many other issues as well, including obesity. Or any other *thing* that is affecting our health or quality of life.
    Thanks for this post.

  11. Terrific post!

    My sister, Reb, has lymphoedema as a result of her surgery for breast cancer. She manages it with a compression sleeve.

    Thanks, POD, for an informative, entertaining post regarding this condition!

  12. I hadn’t made that connection, BL.

    That Reb might experience this as well.

    Here’s hoping she stops by today….I’d love her insights.

    M.

  13. Many many thanks to POD for sharing – I had never heard about this either. It’s such a shame – diseases without publicists are that much more difficult to deal with all alone. I love your idea to draw energy from your anger and use it in a positive way! Inspirational!

  14. Thank you so much for sharing! Like many of those who have already posted, I never heard of lymphedema.

    POD makes a great point in regards to the lack of information in regards to celebrities with this condition — even in regards to the lesser grades (Grade 1 and Grade 2) of the condition.

    As discussed previously on MizFit, power of celebrity can help bring conditions to light that otherwise remain in the dark for most of us. Public awareness is so important no only in regards to finding a cure, but to create a better understanding and a more empathy for those suffering.

    Susan
    http://www.catapultfitnessblog.com

  16. “don’t feel sorry for yourself for too long because it’s easy to fall into the woe is me dumpster. Learn to be compliant” MUSIC TO MY EARS.

    She’s got a wicked attitude. Thanks for sharing this Miz.

  19. It’s interesting to hear from someone with this condition. I’ve been aware of it for years because I use kinesio tape for sports injuries (kinesio tape is also used for lymphedema). But I had never met anyone who admitted to having it or to knowing someone who did. It’s great to get a little insight into what it’s like. Thanks for the post.

  20. man … i was clicking around on her blog after reading this post, and it was quite inspiring.

    thanks for the post!

  21. as someone waiting for the results of her first mammogram, i truly appreciated this post:)

    i had no idea, and feel stronger with this information..its a great blog! thanks for sharing:)

    xo

  22. I am so glad you posted this. Lymphedema does not get nearly enough press and awareness as it should. Thank you so much to POD for sharing her story.

  23. Wow, Pod truly is a strong woman. I think i have seen a documentary on this, but it was in Korean so I couldn’t undrestand it 100%. Thank you for sharing though, its definitely something i didn’t know about!

  25. Thanks everyone for your comments and for reading my post. Stay tuned because one of my future posts will be about toe caps and that subject might just knock your socks off.

    I will respond personally to a few people who responded about their own lymphedema.

    This is a subject, like I said, I spent tons of time trying to ignore and ignoring is not the way to go. If you know of someone or see someone (not a really obese person) with huge, heavy legs or a huge heavy (Not fat!) arm, maybe ask them if they’ve heard of lymphedema? There is another condition called lipodema which is related somewhat to lymphedema but the feet of the person can be completely normal. Unfortunately, I do not have completely normal feet but I am working BACK to normal feet with the toe caps.
    Like I said, that subject will thrill everyone. (and mostly I’m kidding on that).
    But you can all be jealous knowing that I lead a hugely exciting life, thinking of ways to weave the subject of lymphedema and daily life together.

    Thanks so much!
    POD

  27. I always wondered about folks whose arms and/or legs looked like that. Now I get it. My perception has changed. I feel way informed. Keep fighting the good fight, sistah! Thanks for the info.

  30. kelly? I hereby admonish you not to freak out (I *so* know what you’re feeling…)

    Self-exams.
    Mammogram before age 40 perhaps? (Ask your doctor).
    And keep doing what you’re doing!
    You are such an example/role model for living a healthy fit lifestyle.

    M.

  32. I’ll have to give POD a look-see. I know the disease all too well and have or are treating patients that have it. She sounds very informed, and maybe I can answer any other questions that she has. Thanks Miz for highlighting her blog. You have done a great job at opening up our eyes.

  34. It is frustrating that outside of POD’s blog, I don’t think I’ve seen one media reference to this disease. One would never guess it’s so closely associated with breast cancer.

    Thanks, POD, for writing so eloquently on the subject, both here and on your blog. And I can’t wait to find out more about the toe caps!

  36. Amazing amount of research you’ve done. Thanks for helping many women with this information!

  38. Again, thanks for the comments. I am working hard on my toe cap update because of all the sleep that will be lost until I post it.

    Toe caps for everyone!

    My new campaign slogan.

    Yay!

  39. How inspiring POD is! As an avocate for Breast Cancer Awareness I’ve learned a lot about Lymphedema but truthfully did not understand how somone with Lymphedema felt. This was a wonderfully written insight to someone who has not dealt with it from the time of surgery, but her whole life. How Blessed we are to be given this knowlege by someone who has embrased and used it to be a healthier, proactive, Advocate for a little known disease. You are awe inspiring POD!

  40. Thanks Mizfit and POD! My grandmother suffers from this disease, and hers too is atypical. She developed the condition in her 80s and has never had breast cancer or a traumatic injury to her leg. Thankfully, she is able to manage it through a compression pump and by wearing compression hose.

  41. Miz, I am a little behind in reading, but thank you for letting Pod guest post on this subject. I stopped over at her blog and will be checking it out regularly too.

    Pod, excellent post! Thank you for telling your story.

  42. Wow. This is amazing – I definitely have heard the word, but I always thought it was “just a side effect” of other problems. (As in, you know, minor, not life-altering, something that goes away and you forget about it.) I had no concept of the reality of this condition. Definitely, we DO need to increase awareness.

    POD, thanks so much for sharing this. You are very strong and inspiring!

    V.

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