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Alexa sits on a bed, peering over a wineglass, with her bare feet crossed in front of her.
Reflections

One Day at a Time: What 10 Years Without Alcohol Taught Me about My Lymphedema

It's been ten years without alcohol and a lifetime with lymphedema. The key to both, I've found, is to keep taking them one day at a time.

On January 1, 2012, I committed to living without alcohol.

I didn’t have any expectations around how long I’d stick with it, or what it would entail — I just knew that, after six or seven years of abusing alcohol, something had to change.

I had to change.

Now, the good thing about not having any expectations is that you’re guaranteed to be pleasantly surprised should things work out. Fast-forward ten years and a whole lot of hard work later, and I still haven’t had a sip of booze. I’ve learned a lot about myself and, most surprising of all, I learned some lessons about my lymphedema, too.

Here are five things a decade without alcohol unexpectedly taught me about my lymphedema.

1. It’s not “one-and-done.”

When I first made the decision to stop drinking, I thought it would fix everything. Alcohol was the root of most of my problems after all, so it seemed to make sense that, without the booze, all the wrinkles in my life would smooth out. Easy-peasy!

As it turned out, abstaining from alcohol didn’t solve my problems or make them go away: it made me face them. Suddenly I was confronted with everything I had been avoiding, and rather than continue my self-destructive flailing, I had to learn new tools to process my emotions, respond to situations, and maintain my relationships in a healthy way.

Remembering to reach for these tools is hard work and using them is a daily effort, but it’s worthwhile.

It’s the same with my lymphedema: doing just one aspect of my treatment routine isn’t enough. I can’t wear my compression garment, for example, and assume that my swelling will be adequately managed. No, I need my full set of tools — exercise, nutrition, my pneumatic compression pump — in order to best manage my lymphedema.

2. Discipline is more important than motivation.

There’s a quote from podcaster Marcus Parks about living with mental illness that always resonates with me: “Your mental illness is not your fault, but it is your responsibility.”

My substance use disorder is not my fault, but it is my responsibility.

My lymphedema is not my fault either, but it is my responsibility. No one is going to take care of my lymphedema for me but me; similarly, if I don’t do my treatment routine, no one else is going to feel the consequences but me.

When it comes to managing our swelling, most of us are plenty motivated: we don’t want to experience a flare-up or risk worsening our situation, right? The motivation to manage my swelling is there. But all the motivation in the world means nothing without discipline and practice, which means being compliant with treatment routines.

I sometimes struggle with discipline (okay: I often struggle with discipline), but I found that creating a habit tracker is a helpful way for me to keep tabs on my treatment routine and hold myself accountable.

3. Keep it real.

Whether it’s sobriety or lymphedema treatment or whatever else going on in life, we have to manage our expectations. Things don’t always go as planned.

This lesson was a difficult one for me to learn. But then I remember the Serenity Prayer: “God, grant me the Serenity to accept the things I cannot change, Courage to change the things I can, and Wisdom to know the difference.”

I cannot change that I have lymphedema, so I accept it. If there’s a day when my leg is feeling heavier than usual, though, I can change that by using my compression pump or elevating. The more I keep it real with myself and my lymphedema, the better I’m able to manage it.

An image of Alexa's legs elevated on the arm of a couch; on her right leg, she is wearing a Jobst Relax compression garment. Overlayed across the image is text that says, "When the going gets tough, the tough get elevated."

4. Sometimes you have to adapt and adjust.

Going without doesn’t mean missing out. I used to think that I couldn’t go out or have “fun” anymore because I didn’t drink, and yes, for a while that was true: I couldn’t do a lot of the things that I used to do when I was early in my sobriety because it wasn’t safe for me yet.

Once I became more solid in my sobriety, though, I was able to be around alcohol without feeling uncomfortable or triggered. In fact, one of my favorite things to do nowadays is going to bars with friends: it’s all the fun of a night out, minus the bar tab and hangover.

Living with lymphedema, it’s easy to fall into a similar mindset of “can’t” or think we have to abstain from certain activities or events because of our swelling. Even things like clothing become a question of “Can I wear this?” or even “Should I wear this?” because we may be concerned our compression garment will show.

We don’t have to miss out on things because of our lymphedema; we only need to adapt a little. Sometimes that means making sure you’ve got a chair nearby at an event so you can prop up your leg when needed, other times its using a rolling suitcase instead of a shoulderbag to keep your arm comfortable while traveling.

As long as we’re not putting our swelling at risk, we can do most anything we want to. Remember: We’re living with lymphedema, not for lymphedema.

5. Lean on your support system.

During my years of abusing alcohol, I pushed a lot of people away. It was as though my self-destructive behavior created this chaotic whirlpool around me that made it impossible for my loved ones to reach me, and vice versa.

Now that the dust has settled, my friends and family are within reach again, and I pull them close whenever I can. Their support — and my willingness to ask for it — helps stabilize me. Whether it’s to hold me accountable or just to hold me up, my loved ones are always there.

Having a solid support system is so important to my lymphedema life, too. In addition to my friends and family, I have friends in the community who understand the experience of living with lymphedema and all its ups and downs. Be it body image struggles or sharing lymphie-friendly fashion tips, we’ve got each other’s backs (or legs… or arms!). For a condition that sometimes feels so isolating, this companionship and community is vital.

The Journey Continues

It’s been ten years without alcohol and a lifetime with lymphedema.

The key to both, I’ve found, is to keep taking them one day at a time.

5 comments on “One Day at a Time: What 10 Years Without Alcohol Taught Me about My Lymphedema

  1. Jane Puopolo

    A very interesting, thought provoking article . Thank you for sharing this , very real and candid . Thanks again !

  2. Charles bennett

    Life is odaat. Life is great. Good solid article.

  3. Tami McLean

    Thank you for the excellent reminders! You are an inspiration and blessed me today. ❤️

  4. I know about alcoholism! And lymphedema
    Been living with both since I was 15 years old. I’m 62 now and still battling both. Is hard but can you let me know what you did to stop drinking?

  5. Linda Lynch

    Thank you for your inspiring article. I loved the comparison of addiction and lymphedema. I have a food addiction and will use this theory with working both my lymphedema and overeating addiction programs.

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