Lessons Learned from a Lymphie

The Poll

Recently I did a poll in a closed Facebook group I admin as part of my advocacy efforts. The feedback was that #LymphedemaTips was the top topic everyone wanted to see posted in the group.  Not surprising though.  True to my word, I revamped the structure of the group and posted a few tips about using a rolling stick, vibration platform, and compression.

I kicked it off with a picture of how I experimented with some compression socks, and one leg swelled up and the other was fine.

Then I thought about it, and I had a realization.

Any Lymphie probably has a stack up to their neck of stuff they have tried to use as a tool to alleviate the symptoms of this incurable disease.  Yes, like many, I have a pile of crap that has not worked for me. Don’t we all? This disease is EXPENSIVE!!!

However, there’s nothing more expensive than time itself.  Once it’s gone, it’s gone.  You can’t get it back or rewind it.  The few moments you are using reading this are now gone forever.  Right?

#LymphedemaTip No. 4

For Lymphedema Tip #4, I decided I would share some of the lessons learned about living with Lymphedema I have accumulated over TIME.  It’s kind of hard to summarize 23 years of LE in a nutshell, but I’ll give it a shot.

Lessons Learned

• First, I’m not perfect. I continue to make and have made a lot of mistakes as a Lymphedema patient, blogger, advocate, and group Admin.  You will make mistakes with LE too.
• I don’t know everything about LE and regret that I acted like that at one point in my life. In fact, the more people I meet and stories I hear, the less I think I know.
• I try to keep learning from each and every single person I meet.
• LE is not just caused by lymph node removal or genetics.  People get LE from all kinds of things such as surgeries like total knee replacements, c-sections, ankle fusion, traumatic injury such as a car accident, from flying, and plain old medical error by doctors.
• I don’t care what stage you are, if you can #movethatlymph an inch or a marathon, where you come from, or what you have. If you have LE, you are welcome in the group/blog as long as you are a nice person and respectful.
• Pain and suffering from LE is based on the individual.  Never let anyone minimize your feelings or pain.  It is not a competition.
• I think the benefit of my having had LE for such a long time and having known LE in my family growing up my entire life is that I understand everyone is in a different place in their journey. You can’t judge anyone by the chapter that you walked in on in their LE book.
• It took me 20 years to find good fitting compression.  I hope that doesn’t happen to you.
• I’ve been skinny, and I’ve been fat. I’m still not cured but diet changes have helped me.
• I’ve had LE spread 3 times, and it’s a very real possibility I will go full body as I age. Aging with LE is inevitable, but it beats the alternative.
• I know my employment years are numbered, so I’m doing what I can now.
• I know the future is completely unpredictable and cellulitis can strike at any time on any part of the body.
• I can be stuck with this disease until I die, but I pray that doesn’t happen.
• Fight for a cure, but being angry at the world doesn’t necessarily solve anything.
• I don’t focus on this group/blog being super “technical”, because I’m not qualified as a CLT or doctor. There are other resources for that.
• Most of dealing with this disease is mental and about attitude. It’s about being knocked down over and over and getting back up to face another day. Sometimes with tears, sometimes hanging on for dear life, but still facing it.
• It’s okay to cry and vent.
• I had a parent with LE, and I watched my mother care for her LE husband and his cellulitis bouts for 32 years until she passed. I watched her feel helpless.  You don’t forget something like that.
• Unfortunately, there are always new members to add. Hopefully that will end one day.
• If you have a lot of knowledge or want to help, that’s great. Please volunteer in your area or for an organization. Write a blog, or lobby on Capitol Hill.  We have MOUNTAINS TO MOVE for Lymphedema.

As more time passes, I’m sure this list will grow and change. I encourage you to make your own list. You might be surprised at how far you’ve come without even realizing it. 

Wishing you awesome lymphatic health as always!