A bump (or pothole) in the road

Yesterday I was watching a TV show in which one of the characters has a chronic illness. While trying to empathize with another character, he said something that struck a nerve with me: I know what it’s like when it feels like your body is failing you.

I instantly felt this trigger some strong emotions that I had clearly kept buried deep, down inside.

It hit me…hard.

I got a little teary-eyed in the moment, but it wasn’t until I was cooking up the lazy single lady’s dinner of pepper and mushroom egg scramble that I let loose. I wailed. I stomped my feet. I yelled profanities. Thank god the loud hood fan was turned on and music was blasting from my iPhone otherwise I’m pretty sure my roommates would have thought I’m even crazier than I am.

In this blog I have shown you strength, I have shown you determination to overcome. I have shown you courage and insight. I have shown you acceptance. I have shown you positivity.

But goodness, y’all, I’m only human.

Humans go up and down in this journey called life.

I wailed and I stomped and I yelled because there is a part of me that believes my body is failing me, that believes I was dealt a shitty deck of cards and I asked myself WHY ME.

In true form, I immediately jumped off the deep end.

In that moment I thought to myself, Grace, you’ve come so far in your lymphedema journey, in this journey for a healthier state of mental health. What happened?? All that progress. Down the drain. ALL OF IT.

The voice roaring in my head was the type A, perfectionist little devil in me that sees everything as extremes, everything as black and white, everything as really good or really bad. I’ve ruined ALL my progress. I’ve gone and jumped off the cliff and I’m going to have to start ALL over again.

Okay, now let me stop myself right there. Stop, I said STOP.

Yes, I am now in a better place. But that doesn’t mean there aren’t still going to be bumps (or in this case, a pothole) along the way, there aren’t going to be triggers that send my mind in a frenzy to find solid ground.

I focus a lot on mental health in this blog because that has always been my biggest demon and it will always be my biggest battle. I am my own worst enemy. 

And for better or worse, my lymphedema story has brought out the worst in my demons. It has brought them raging to the surface, overflowing to the point where I have felt completely and utterly out of control.

I’m learning to control them. I’m learning to take things one step at a time, one day at a time.

As my wise dad told me last night in between my tears: you’re never going to arrive the way you want to, because life is a journey.

This is the biggest lesson I have yet to fully learn and embrace: the fact that there will never ever be a big finale, that there will never be a perfect resolution to the struggle. It will never be just white, or just black. It will never be just really good, or just really bad.

We are always evolving, always learning. Just because I hit one bump or pothole in the road doesn’t mean I’ve lost all the progress I’ve made so far. It’s a mild detour and I will move past it. I am proud of the progress I’ve made and I will continue to be proud of myself as I learn to navigate the twists and turns and bumps and potholes that are yet to come.

“Every day is a journey, and the journey itself is home.” ~Matsuo Basho

17 comments

  1. Darlene (Rose) Hominick says:

    Girl ,I have been down that road many a time over the last 35+ years. I have searched for the silver lining to the lymphedema cloud, and (quelle supris!)I have yet to find it. Thank you, thank you, thank you, for the incredible gift you have just given me. You reminded me that I am not a failure at life when by-times I have to call a spade a spade and use it to shovel the doody-kaka (ie SHIT!)that is lymphedema! I think everyone has good and bad days; that’s life. However, just once I would like to have a good day and/or a bad day and not have swelling AND have shapely calves, and gorgeous shoes, just so I’d know how that feels! I mean how good or how bad would it be? Just wondering. Anyhoooo! Thanks for the encouragement, because that is really what this blog post was. I may not be “normal” , but I suspect I am a “normal person with lymphedema”, so thanks for the heads up. It was comforting.

  2. Andrea Summers says:

    There are days when I don’t think about the fact that I have lymphedema. And then I’m reminded when I try to move in a particular way, or wear straight leg pants, or shorts, or shop for gorgeous shoes- or even UGLY shoes! I allow myself some “grumble time”, throw a tantrum or two, and then keep moving.
    Lymphedema SUCKS! There are too many doctors with not enough (or no) awareness about this condition. Good treatment is not always convenient or available, and is expensive. It takes a toll on my body and my mind. And I am grateful for this blog. Thank you for using your story to help encourage and strengthen others. I need it and appreciate you!

    • GracefulLymphedema says:

      Andrea – It means a lot to me to hear what this blog means to you. If I can help one person I know I’ve accomplished what I set out to do. Thank you x x x

  3. Chrissy says:

    No matter what we have to remember that we are not alone in this battle of day to day pain in lymphedema. When I told people before that my feet hurt, they would say well you need to lose weight and true I do need to lose weight but a few months ago I was diagnosed with this and some days I have good days and some days I have bad. Some days I want to kick and scream and cuss like you did.

    But no matter what…we are not alone in this fight.
    Thanks for sharing.
    Chrissy

  4. wendy Smith says:

    Thanks for sharing, I’m a mom of a 14 year old daughter with lymphedema and many other Heath issues. I plain to follow you.

    • GracefulLymphedema says:

      Thank you for reading! I was diagnosed at 13, so I definitely understand the struggles of being in high school with lymphedema… :/

  5. Laura says:

    How funny that I should read this piece right after shoe shopping. Today I had to buy ugly men’s, size 11.5 gym shoes, while the lady next to me tried on gorgeous, black, leather pumps with 5 inch heels.

    My choice was the only shoe that came anywhere close to fitting after trying on 8 different pairs. I will still be in some pain as I break them in. I will wear them until they are almost falling off my feet in tatters because I hate shoe shopping that much.

    It’s not like I’m any type of fashion maven. I’m mostly blue jeans and tee shirts type of girl. I just get kind of tired of wearing tennis shoes to weddings and funerals.

    Meanwhile, the lady next to me wrinkled her nose, decided the gorgeous shoes just weren’t up to her standards, and she blissfully jumped up to try on many more pairs, all of which will fit her perfectly.

    Anyways, your writing was a good part of my day today. Very insightful of not just lymphedema, but of the human condition. I am bookmarking you right now

    • GracefulLymphedema says:

      I definitely hear you on the shoe shopping! NOT my favorite activity. I wear 11(ish) 4E men’s sneakers…ACK. Somehow I manage to fit into women’s 12WW (but only about one quarter of the time, so my feminine/dress shoes are limited!).

  6. Monique says:

    Grace, you have described many of our feelings perfectly. Life with lymphedema is a constant physical, mental, spiritual and emotional battle. We work so hard to be ok with our condition despite feeling like life has dealt us an crappy hand. We know what we want out of life and we work tirelessly to meet our goals, believing that the struggle will be worth it. We feel so strong as we progress towards our goals – then we get thrown a curve ball. We suffer an infection, our insurance craps out on us when we need it most, we hear someone judge us when we are having a rough day, or we simply feel ignored and shoved aside. I found it very easy to relate to your feelings and I appreciate your insight at the end assuring us that not all our progress is lost when we hit our “bumps” – because they surely will come. What matters most in our success is that we get up. Always get up. That’s what I have to tell myself anyway. Thank you for your post. Your blog is a positive resource for everyone :)

  7. Paula says:

    Thank you, I have just found your site through solaris, your comment really hit home with me. I always try to keep a positive frame off mind. Then to have meltdown moments . Just feel I am on the verge of a major health kick at the mo. Yoga, diet, chi machine, more positive affirmations etc. (I call it a paradigm shift). I will definitely be back to your site soon to have a good read. Thanks again. :)

  8. Elaine says:

    Hi, so glad to find this – have been searching for a site like this since Lymphedema Girl pretty much stopped posting. I was diagnosed with primary in my left leg almost five years ago, have gone up and down with treatments though I’ve been lucky to have found somebody good. Am in a tough place right now since I appear to have headed off a cellulitis infection before it could get going – and while this alone isn’t that big a deal, it’s bringing back traumatic memories of getting cellulitis so bad I was in the hospital exactly four years ago.

    Glad to be here and hope maybe I can add to our collective knowlege about this “lovely” condition. (FYI a friend of mine wrote a parody of “Macho Man” called “Lympho Leg” that also might bring some chuckles). I’m an American living in Japan and I think occasionally I run into cultural attitudes towards illness that are different, like my leg therapist who doesn’t understand why I don’t wear a stocking with an around-the-waist panel when I only have lymphedema in one leg. (Japanese women are big into pantyhose).

    And yes, I think it’s a given that with any chronic condition you’re going to have meltdown days. I’m just over one myself 😛

  9. Darcie says:

    One of my struggles is the fact that I live in Phoenix and I am roasting seven months out of the year. The heat makes my swelling so much worse, and yet I just won’t wear the compression stockings because they look hideous! Even more so when you wear shorts all the time- shorts and compression stockings are a deadly mix. :(
    I don’t know what’s worse- walking around with stiff swollen feet and ankles, or looking like a sausage stuffed into tight brown nylons. I am a grown woman and my head tells me I should know better and get over it, but I just haven’t been able to. I’m still jealous of my friends who wear cute dresses and skirts with pretty shoes-I still get upset when my young son’s friend tells him that his mom has fat ankles- I can’t stop thinking that people are staring at my lumpy legs and thinking how gross they are- and I have this spark of hope that someday a cure may be found for this. A miracle surgery..medication, something. It is hard to think positively about this condition, definitely a work in progress.

    • GracefulLymphedema says:

      Darcie — I COMPLETELY understand. I hate the summer months. Nothing makes me want to hide in the AC more than a 90+ degree and high humidity. And it’s such a catch 22 with the stockings — it’s terrible wearing them in the heat, but then the best thing to do is wear them. I find that in the summer months I tend to rely on other “tools in my toolbox” more than the stockings. I’ll use my Tribute night garment almost every night (and blast the AC!). I also try to swim as much as a I can and do self-MLD and/or dry brushing. You need to do what works for you in the place that you’re at. Something is better than nothing :)

  10. Jennifer Beadle says:

    I have just stumbled across your blog and followed you. I have primary and was diagnosed 18 years ago at the age of 17. It’s been tough and I have had plenty of down days. I also hate shoe shopping and found myself envying my friends that can wear pretty shoes and dresses. The hot weather is tough but luckily I live in the UK so the nice weather is short lived lol. When I have my bumps in the road I try to remember that although my leg stops me from doing some of the things that ‘normal’ people can, it has also given me strength and a never give up attitude that I may not have had if i hadn’t had to struggle.

Leave a Reply