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Lymphedema Management Tips Personal Primary Lymphedema Info

“I’m not THAT bad…” – Importance of managing mild Lymphedema and avoiding living with regret

This page is not just about hope, inspiration and taking action, it’s about preventing (as much as possible) the advancement of LE too. The flip side of the story.
This picture is from Oct 2007. The day I went bilateral. 😪 Literally within hours of stepping off an 8 hour direct flight from Houston to Honolulu my left leg began to puff up. You can see my original right LE leg with NO compression. I was in shock and DENIAL that I had LE and now that it had spread. My father always pleaded with me to wear my compression in the original right leg and wear sensible shoes with laces. I complied in winter when it could be hidden but not in summer. ☹️ Certainly not on an island like Hawaii. 🌴🌺

My excuses to my Dad –

1) I’m not THAT bad. I don’t really have LE, not like you. It’s just a little swelling compared to yours.

⭐️ I didn’t realize Dad was once mild too. Shame on me. 🤔😔

2) I’m a woman, you’re a man. 💃🏻💃🏻 You always wear pants and no one questions it. I want to wear skirts and shorts like other young women my age. I was 33 here but had had LE since 20. I don’t know any young people with LE my age! You’re old.

⭐Typical childish response to a parent.  Little did I know Dad had worn shorts fishing and swimming with his friends and brothers and had been made fun of too. That his brothers had defended him, because my grandpa had had it too. They too knew he was mild compared to my grandpa. See that cycle?
3) It is #%^*^ hot! Dad, how can you stand to wear full compression under jeans in this heat??? 😧😢😥😖😫😩
⭐️Dad was a welder by profession and worked outside in the Texas sun day in and day out. Never complained.
I will live to the day I die with the regret of NOT wearing my compression full -time when he told me to in those early years, and I have no one to blame but myself. I take full responsibility. As part of that responsibility, I am now encouraging everyone that is mild to share their compression and fashion advice.

I will never know if I had been wearing compression properly on that flight, had the outcome been any different. However, at least I could have looked back and said “I did everything I could and LE won” instead of “I wish I had at least tried.” 😢

Regret is very tough to live with, and I had to learn to forgive myself and move forward with that on my own. I can only share my story. If you are mild, wear your compression if you have it. And yes, always always always feel safe and free to post your success too. ❤️

As always, I’m wishing you great lymphatic health and hope that you are pain free. 💙

Vern

8 comments

  1. I have very mild LE, secondary, right leg mainly for 22 years. My very first therapist put the fear in me 22 years ago. I always, always wear my compression, no matter how hot, how uncomfortable, no compromising.

  2. I was fortunate to be diagnosed within 9 months of my right leg swelling up, but the diagnosis was delivered in SUCH a poor way! The doctor emailed a couple of articles with photos of people with late stage LE and suggested that I practice low impact exercise, find someone to do MLD (no suggestions), wear compression, and get a therapist. The photos were TERRIFYING! I will say though, they put the fear of God in me, and I have worn compression 99% of the time since my diagnosis.

    Thanks for the validation, Vern, and I would also encourage others who have Stage I or II LE to always always always wear their compression! Prevention is so much easier than trying to back pedal! I would much rather be slightly uncomfortable than to put myself at risk of making my LE worse. And the compression is a good entry point to teach about LE too!

    1. Thank you beyond words for sharing. I wear my compression sleeve & gauntlet always when awake & think I really don’t need to wear them all the time but you’ve convinced me it’s better to be cautious than have to try & backpedal w/ LE.

  3. I so needed to read this article. Thank you Vern. I ave mild lymphedema in my right hand, arm and breast. It has just been fourteen months since
    Lumpectomy and one year since I swelled after a three hour airplane ride. I sometimes try not to wear my compression and within a day my arm aches and fullness begins. I need to make caring for myself a priority

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