I Don’t Want Lipedema to Take Over my Whole Life!

I think I’m going through all the stages of grief that anyone would feel when they finally get a diagnosis of something like lipedema.  I’ve had it for years, it’s getting worse, I’ve never known what it was, and now I know.  And the conservative treatments can take over my life if I let it: Dry brushing, massage, using the pump at least an hour a day, wearing compression, walking, swimming, yoga, support groups, advocating at the doctor’s office, blogging, supplements, clothes choices, mobility issues.  It just goes on and on and on.

The good news is, just like all things, I believe I’m going to get into a rhythm and the pendulum of craziness will go back to the middle eventually.  You figure stuff out and you get back to living.  I’ll use the pump at bedtime, put on different pants under my clothes, wear different socks.  I might have to stop eating sugar (egads!). I’ll take this year and do the surgeries.  I mean, what better year right?  It’s not like I’m doing anything else during COVID.  I had all this travel scheduled and now it’s going to get cancelled anyway, I think.  So, I do the surgeries and heal while we’re all teleworking and 2022 will come and go and I’ll be back to doing all the things.

Good has come from this.  I have been able to meet some really amazing women from everywhere, of all types.  And when I say everywhere, I mean all the countries I’ve ever been too and want to go to. Lipedema is really prevalent in the world.  So, my world will not go back to the same as it was before diagnosis.  Because now, unlike any other time, there are women out there who get what I’m going through – heck, their stories match mine, and they truly want to see all of us just have better lives.  So, my life is better in a way because of this cool network of women with common suffering and victories that I get to keep even if my legs work and look better after surgery.

Just a couple of weeks ago, I was fortunate enough to virtually meet a really neat lady, who reminds myself a lot of me.  She’s outgoing, outspoken, pretty, confident, and she was a leader in a professional role before lipedema influenced her retirement. I feel like if we lived close enough, we would have just been friends naturally anyway. I bet she’s a hoot to go see a funny movie with!  I saw her on a YouTube video talking about her experience.  I’ve been able to connect with her and find out that she is happy.  She had surgery, she changed to keto eating, her legs aren’t perfect, but she’s happy and she gets to do things with her grandkids requiring mobility.  She has a life.  Yes, lipedema is a small part of it, but it didn’t win.  I feel star struck that she’d even talk to me, but I feel grateful to hear how her story is going, like there is hope for us.  And friend, you know you are, thank you for taking the time to give me an update.  I made me think going through all this surgery mess will be worth it.

I don’t want lipedema to take over my life, but I got it and I have to deal with it (avoiding things is what NOT to do) so it doesn’t.

Take care,

Susan

Me, laying on the floor in fun pink with an umbrella.

Top Articles