We have reached a milestone. One of our subgroups, The Lymphedema Table – For Lymphies And Their Food, has reached 1,000 members.
You might yawn or say whoop-dee-doo accompanied by an eye roll. Why is this such a big deal to me? I’ll tell you why.
Every CDT intake or admission I have ever answered questions for has always asked me about my diet. I have seen it discussed at Lymphedema conferences. Many research articles say if you eat better, you will have less swelling. Yet, as a patient, I have not been provided formal resources around it as part of my LE therapy other than maybe a handout or two. I’d love to hear if some programs have full blown in house nutrition not associated with bariatric intentions or weight loss.
That’s just the population that has access to a CLT or CDT treatment. If you don’t have insurance or have no resources in your area, then where are we supposed to go for food support? Would a local 3rd party nutritionist necessarily know what it means to have LE? I think there’s a high probability of a no to that question.
Also, I’m one of those people that think that weight doesn’t necessarily mean you are healthy. You can be “thin” and still feel very lousy with LE. Are thin people given any info on diet? Do not assume that thin or mild cases of lymphedema do not need this information.
For the record, this is not a complaint against my CLT or even the hospital program I attend. I’m 4 years post reduction and maintaining well. Knock wood. I do a lot of things to maintain my regimen. Part of that reduction regimen was food changes.
Where Do I Go?
Where do I go if want to ask others that have LE too questions? Where do I go if there are no in person support groups in my area? Maybe there is one, but I can’t make it as part of my schedule constraints. If I attend a support group, is diet necessarily going to be the topic discussed each and every time? Probably not.
I did use diet as part of strategy to reduce, but it took me a long time. It took me a year. If I had had a group for support, maybe I would’ve reduced faster. Then again maybe not. I’ll never know, but I recognize it as a gap.
I decided to build a group, a safe haven if you will, where lymphedema patients like me can have discussions with each other on what food means in their relationship to their lymphedema and to help one another.
A lot of members join the group to be told what to eat. That’s not what this group is about. Food is very personal. If you don’t think it is, make a comment about someone’s cooking, recipes, or what their family eats. It can get heated very quickly figuratively speaking.
Instead, our vision is simple.
The vision is us all sitting down together as friends and sharing; whether it’s a wonderful meal, recipes, or support needs to stay on track with personal food goals. Treat your posts as if you were invited to sit at someone’s kitchen table.
That’s it. We had some bumps along the way in defining our vision, but we are now on our way and learning and growing every single day. Lately we have even discussed how difficult it can be to stand while cooking with leg LE or the act of cooking with arm LE.
Why Is It Separate?
Why is this group separate from our main group? Lymphedema management is overwhelming to the newly diagnosed. If you are barely learning how to wrap or starting therapy, you just might not be ready to tackle another subject. It takes time to process what’s going on and what to do.
Our groups are divided into 3 pillars. The main group is for all things leading to reduction, The Lymphedema Table group is for food, and our exercise group is The Lymphedema Running & Fitness Club.
Is it Perfect?
No, it’s not perfect.
Are we trying? Yes. Three volunteers moderate this group.
Are we kicking off those relevant conversations? Yes.
Are we getting Lymphies to even think about the food angle with respect to management? Yes.
Are we in judgement of what you eat? No.
Are we the food police? No.
Do we want you to ultimately feel better? Yes.
Your plan and outcome will be highly individualized and of your own making. We want you to do your own research and trial and error. We want you to find your own individual swelling food triggers. We want you to be successful and find what works for you. We just provide the place where you can share and talk to others.
Of course there are some that do not need this type of support, but it’s nice to know it’s here, right?
Join us by answering the questionnaire at the following link: https://www.facebook.com/groups/TheLymphedemaTable/
Wishing you great lymphatic health,