The Thrill is Gone – Journey With Lymphedema Continues

Lymphedema Journey With Lesley Ronson-BrownBy Lesley Ronson Brown, 500 Hour Yoga Teacher

As my journey with lymphedema continues, I find I am tiring of it. It is no longer something new or something to get used to. The thrill is gone. Not that it was ever too thrilling, mind you; but it was interesting to learn about and begin to navigate my way through the lymphedema maze. I think, however, I had an underlying hope that if I did everything I was supposed to, that somehow it would go away or lessen substantially. But it hasn’t. It hasn’t gotten too much worse, but some days my arm is definitely bigger and some days a bit smaller. But it seems to be bigger more often than smaller. I feel resigned. This is one long-term relationship I would rather do without.

So what’s a girl to do? Sometimes when I’m stuck and not in the flow (get the lymphedema pun?!), I pretend I am a friend advising someone who is stuck in the same situation. I would tell myself it’s time to set up a counseling/action plan. First, I need to listen to myself and acknowledge my true feelings of frustration, dismay and sadness. Acknowledge that I am in the doldrums, as if on a plateau, a lonely plateau. And then figure a way out of it. Like an explorer lost in a jungle. Time to send out an SOS. And guess who I want to come to my rescue?!

Prince Charming! Yes, sad to say, that fantasy is still a real one. I want my prince to come. But he doesn’t have to take me away. I just want him to make my doctor and physical therapy and lymphatic drainage massage appointments. I admit, I want him to massage my arm, too. And OK, OK, I want him to magically charm my arm into being its regular size again.

But this ain’t no fairy tale. And the only one who can “charm the arm” is me. But I don’t wanna!!!!!! I want to pout, put my hands on my hip, say “agghhh” while moving my heavy-metal-concert be-boppin’ head, but with more speed and more jerkiness. Attracting Prince Charming while doing so, of course.

Just the thought of doing that, though, makes me laugh because it’s not quite my style. But sometimes it’s helpful to get out of your style. It can jumpstart you onto a different path. Hopefully, a better path. Realistically, I know spending more time on my yoga mat as a student, not a teacher, will help me. Just by doing yoga, the frustration fluctuations will begin to lessen, becoming less extreme. Practicing more pranayama, or breathwork, will begin to quieten my ego and move me towards accepting what is. My action plan could involve more volunteer work as that is always a good way to move my ego away from its focus on me, me, me, me, me. I will devote more time to massaging my arm myself. Maybe I can charm it a bit. Or at least find it more charming and lovable as it is.

Even though I will do all that, I have a confession. It is kind of fun to rant and rave. It’s fun to sometimes flail about. Especially for those of us who are usually the nice ones, the happy, positive ones who can handle everything with what looks like ease and even luck. It feels cool to morph from Ms. Perky to Ms. Jerky, and watch people’s reactions when we bust out. It is powerful! I strongly suggest it for all you nice girls out there. It’s a definite scene stealer and a good strategy to get your way because people are stunned into shock. Trust me, they don’t like it when Ms. Nice Girl Perky starts changing. But, unlike our human companions, lymphedema doesn’t care. It isn’t going to budge, no matter how much I stomp or how many deals I try to make with it.

So, since Prince Charming hasn’t shown up yet to take care of my arm, and that arm isn’t going to budge by itself, no matter how I act; I guess it’s time to put on my big girl panties, stomp into my thigh high boots, wriggle into my hoop skirt with the “smart ass white bitch” patch embroidered on it and sashay up some action. Oh, yeah!…now that’s a great visual, isn’t it?

Lesley BrownLesley Ronson Brown is a two-time breast cancer survivor and a three-time lymph node cancer survivor.  She has had lymphedema since 2011 and has learned how to manage it through traditional and complementary therapies.  Lesley is a certified Yoga teacher, with a specialty certification in Restorative Yoga, and has taught for more than 15 years.  She also is certified in Pilates and Group Fitness Exercise. But her favorite thing to teach is yoga!  She currently is completing her 500-hour yoga teacher training and is writing a thesis on Yoga and Lymphedema.

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Comments

  1. Yes LE … So frustrating as there it is 24/7!!!! Needing to be looked after and tended too… I am going to reblog this on my page as sharing how it feels will help to educate others … Especially the doctors who think it is “Nothing much”!!!!! Thanks for your insights.. Helen

  2. Reblogged this on My Lymph Node Transplant and commented:
    Reblogging this as it shows the frustration of coming to terms with the fact you have Lymphoedema 24/7…. It needs constant care and attention or it gets worse… Not sure if it is ever possible to totally come to terms with this!!!!!! Thanks your posts are always heart felt but amusing too….

    • Lesley Ronson Brown says:

      Thank you, Helen. It’s always there, isn’t it? But it’s nice to have travel buddies on our journey. Wishing you and all the other lymphe-travelers out there smooth sailing, Lesley

  3. OMG I hear ya! I hear ya! I am a 2 time survivor with bilateral lymphedema. Your article is so true. Lymphedema can be so frustrating. While they’re not swollen too much, the heavy, achy, burning is a daily reminder of this journey — as if we need more reminders, heh! We just need to take care of ourselves and use our support (get the pun!, ha!) systems. Thanks for sharing.

    • Lesley Ronson Brown says:

      You are so welcome, Erin. It is quite a process, isn’t it? And since it’s always there, it’s hard not to keep it “top of mind”. So I keep it away from the top by doing things I enjoy, from hanging with friends to petting my cat, Mr. Krinkles. Petting “Krink” is very soothing and relaxing. And he never looks at my arm strangely or asks how my “condition” is while looking at me with pitiful, doe-like eyes. He just looks at me with love in his eyes.
      That unconditional love is great support. Speaking of support, I loved your pun!

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