Right Now is the Best Time to Start

Let’s talk about starting, or restarting, a self care and/or movement routine.

I came across this photo of a keychain I had made at the beginning of my #lipedema journey. 

It was a reminder, that while initially I listened to nothing I could do, and as a result I progressed a great deal, losing nearly all my mobility, that today was a new day. 

Any day, any moment, can be a new start. It doesn’t have to be this big commitment. Just doing one thing is a good start.

Maybe you have not been able to keep up on your self care and/or movement routine like you would like to, and you don’t know where to begin? 

Maybe you ask yourself, “why bother”? 

Because you are worth it. Caring for our bodies is worth it, and while not a cure, it helps slow progression and makes living with lipedema a lot easier.

Starting over is not a failure. 

Starting over doesn’t mean you go all the way back to where you began, because the good news is, you always start from experience.

You know what helped, and what did not. You know what worked for your routine and what was a challenge for you.

Start with something simple, something that you enjoy, something you can tack onto your daily routine.

#habitstacking is how I do it. I add self care and movement to something I already do.

Like when I make the bed in the morning, I add in some stretching to loosen up my body. 

When I check in on the support group in the morning and write the daily post, I do so from my vibration platform.

When I have a print job at work, I add some squats while I wait, or when I go into the kitchen, I do some kitchen sink push-ups while my coffee brews.

By adding in my self care and movement this way it doesn’t feel as time consuming.

I also like to schedule a #peloton ride when I’m not as active as I want to be, by scheduling it I set time aside for me, like I would another apt. 

It is what works for me, what works for you? How can we help you start or restart your self care routine? And what ideas do you have for when we get stuck?

No negative feelings attached. Life in general is challenging, living with a #chronicillness that requires a lot of self care makes it even more challenging.

Menopause Monkey Wrench on my Lipedema Journey

Warning ⚠️ we interrupt this usually positive blog for some #realtalk 

Some days #menopause feels like a big #monkeywrench in my #lipedema journey.

Transitioning through menopause made my lipedema symptoms spike! My mobility took a hit (that thing I worked so hard the past ten years to regain)! 

Not to mention the typical menopause changes we can go through. Ok, so I mentioned them. #iykyk 

But purely lipedema based rant - the #selfcare things that were working well for me, allowing me to be active, and do all the things I wanted to, when I wanted to do them, are no longer working the same way. 

I’m sure they are still helping, and yes, I’m still doing them all, and then some, they are just not helping at the same level.

Which is super frustrating. It takes a long time for each person with lipedema to figure out what works (so much we try doesn’t, even when it does for others) - so when you have a nice set schedule of self care that helps you feel somewhat normal, and then poof, it no longer works the same, and it is time to retry everything all over again and see what sticks - it is not only frustrating but exhausting on top of those regular changes women go through - it can leave you with zero spoons! #spoontheory 

It has me questioning surgery big time, the only thing currently that can remove the diseased tissue, but now I’m post menopausal, so I question the recovery at my age, the cost as I near retirement, and at late stage and higher BMI is it even an option? I never wanted surgery, so it is down right scary to even contemplate it. 

Don’t get me wrong, I’m still the Queen of MODs and positivity BUT some days it is utter BS what we deal with. 

And my heart goes out to all in our community dealing with even more debilitating conditions on top of lipedema, on top of menopause. Which makes me feel horrible for even sharing my frustration. 

Movement is still key for me, had to switch up what I do, and really listen to my body clues, but movement in general is key.

#mindfulmovement is the name of the game. Giving my body love for all she does for me 💜 will lead my self care now and always. Rant over.

Badass & Healing Event

Last Monday we took the first of four Peloton Reflection rides with instructor, Christine D’Ercole. 

It was the “I Am” ride of the #iamicaniwillido process of recognizing and changing our self talk.

When you say “I am”, what words follow? 

A lot of times they are not easy to say out loud. Our self talk can be pretty brutal.

One thing Christine said during the ride was once we are able to say them, we may need to edit them.

Especially if your phrase starts with I am not… (strong enough, tall enough, smart enough, small enough, etc.)

We need to take the “not” out… I am strong enough, or just “I am strong”. I am smart enough, or just “I am smart”. 

The taking the “nots” out turned into a visual for me, as in untying the knots of the things that tie us up and hold us back. Seeing myself visually untying the knots that are holding me back, and as I untied each heavy criticism, I was lifted up a little more, they were no longer weighing me down, and I could begin to soar to new heights. 

That is the power of journaling. Really spending time with your words, your thoughts, validating those that come to the surface (those we may not even realize we are thinking/saying), and working through them let’s us know where we are at in this moment. And knowing that, helps us move to where we want to be.

April Sluder from The Lipedema Journey is amazing with writing prompts and agreed to collaborate with us on this event, to help us work through those emotions. 

But let’s not forget the physical side. The ride itself gets us to drop our baggage, to let go of all the life things on our shoulders, that make us need to stuff down the very personal emotional journey we are on. It is a body/mind journey - some days more body, some days more mind. 

The connection to the #fascia and those knots/adhesions are also not lost on me, how we work through the fibrotic tissue to open the flow! 

Do you see why I have needed some extra time to write and process. That is what #badassandhealing means we can be #badass and still be #healing at the same time.

The “I Can” ride will be on 10/2/23 at 6:30pm EDT, if you want to join us. You can find us at #lipedemafitness on the Peloton leaderboard. And you have time to go take the “I Am” ride if you missed it on Monday.

If you do not know, you don’t need a peloton bike to participate, you can get the peloton app and use your own stationary bike, that is what I do. I’m a huge fan of all the classes peloton offers in their app, not just cycling, but treadmill, strength, yoga, meditation, etc. so many classes, so little time LOL.

Also, Christine D’Ercole has an amazing website www.iamicaniwillido.com and does a lot of self talk healing work called wordshops. Highly recommend checking them out.

The Lipedema Link Podcast & Other Resources

I recently had the pleasure of joining Don-Ellen Ray and her producer, Phil, on their wonderful new podcast, The Lipedema Link. 

Like me, Don-Ellen also has Lipedema and we talked for over an hour about this chronic and progressive condition, and ways we can slow the progression, feel stronger in our bodies, and the importance of finding others like us to make the journey a little easier.

Click here to watch!

I want to thank Don-Ellen and Phil. The stories they bring are reaching people who need to know about Lipedema, so they can be diagnosed sooner, and begin treatments in an earlier stage to hopefully prevent them progressing to later stages like I was when I was diagnosed, back in 2007 at a stage 3 Lipolymphedema.

If you think you may have Lipedema and want to join the Lipedema Fitness support group, and join a community of others who understand what you are dealing with on a daily basis, and provide the most caring support I've seen on social media, we would love to have you.

The Lipedema Link podcast already has several stories you can watch, and the level of care this dynamic duo extends to the community is simply wonderful. Maybe you have a story you would like to share, I highly recommend reaching out to them.

LEARNING MORE ABOUT LIPEDEMA

This condition can be overwhelming, just getting diagnosed can be a challenge. I recommend the Lipedema Foundation, which is such a great resource, and they have a one page brochure you can print, or even ask for printed copies, and share with your doctors, family, and friends. I like to leave them on bulletin boards in the gym, favorite cafes, any place someone with this condition (or someone who knows them) might find it. The Standard of Care for Lipedema in the US is also an amazing resource to learn even more.

The Lipedema Foundation is a not-for-profit organization that provides grants for research into all things Lipedema! I had the absolute pleasure of meeting their founder, Felicitie Daftuar at the 2014 FDRS Conference. This group is responsible for over 12 million in grant donations to try to find some real answers into what we are dealing with.

The research presentations at the annual FDRS conference is a highlight for me, they give me hope and let me know we have some major medical professionals in our corner.

So please know you are not alone. And if you are able, I highly recommend coming to the next FDRS Conference, being held in St. Louis! I cannot explain the feeling when you walk into a room filled with hundreds of others just like you.

The Amplifier of Pain is FEAR

September is Pain Awareness Month and I’ve been diving down the rabbit hole of seeking ways of reducing pain naturally.

Diving so far down, I’m popping back up in the 80s with this boombox reference. And you know I’m so not mad at that.

I heard this statement last night on a TEDtalk with Doctor Amy Baxter - she was talking about “how to hack your brain when you are in pain”.

How fear can amplify our pain, and having control can reduce it. She said, “having control over your options decreases pain”

Man that struck a chord with me. 

It is the same idea that strength training gave me emotionally. That I could have say in what my body was experiencing.

I cannot change that my body has #lipedema but I do have some options in how I respond to it.

I’m not trying to belittle the pain, I fully know living with lipedema is an all day every day challenge.

But I also know that I can do things to lower the level of pain. I have options.

And just the opposite, if I get stuck in the pain cave, if I let that fear of what I’d take hold - it can be a quick spiral into deeper more prolonged pain. 

Which takes me out of doing the things I know help my symptoms and reduce my pain.

Such a viscous cycle.

But guess what? Our standard lipedema self care methods that are all things we do to reduce the symptoms of our condition, well every one of them also reduces pain. 

We have some options. We have some control. 

To go a little deeper, we need to recognize that what we are doing is caring for your body, being in the right headspace to be positive while we are doing the treatments, is key.

And furthermore doing things that bring us joy, that we don’t think even have any impact on our bodies, like looking for those #glimmers we talked about recently, can really turn down the volume on our pain. 

And surprise, seeking joy helps our symptoms and our pain way more than you could even imagine. It all counts.

By turning down the focus on the pain we can redirect our attention to the joy, and it builds when we do.

Whatever we focus on grows, so let’s turn up the joy and turn down the pain.

#lipedemafitness #lipoedema #lipolymphedema #healing #emotionalfitness #pain #80skid 

Vibration for Lymphatics & Fascia

Two of the main focuses of those living with #lipedema since day 1 are treating our #lymphaticsystem (inflammation) and our #fascia (fibrotic tissue).

When we find treatments that work on both at the same time, it is a win win!

I started with a #vibrationplate for my lymphatics back in 2014 and still use it every morning. 

Then I added the handheld massager to help break up fibrotic areas. I also would use it on my feet for reflexology spots, mainly because it felt so good, but also it seemed to help the lymph flow easier, too.

We learned those fibrotic areas are adhesions in our fascia.

Gentle vibration works best for me, as it doesn’t cause pain to use, so my body relaxes during treatment, and that is just what we want for healing.

When we learn more about our bodies in general, we can help with the symptoms. 

We should stay curious as to what is going on, and not just treat symptoms, but look at the route causes.

I want to fix what is going on in my body, not put a bandaid on it. 

We obviously need pain relief and limiting our edema, etc, but while we ease those symptoms with self care, movement, compression, etc., I will keep looking for what is going on below the surface.

#lipedema #lipoedema #lipolymphedema #lipedemafitness #staycurious #lipedemalife 

Shameflammation

I was I today years old when I first heard this term - thank you @stopchasingpain 

We all know when living with #lipedema and/or #lymphedema we deal with #swelling and #inflammation - in fact inflammation and fibrotic tissue are the two key things we are all working on to help mitigate our pain and progression.

As we learn more about our bodies and our #fascia we learn just how connected our bodies and brains are. Those gut feelings, and gut reactions have new meaning. 

#shameflammation is #shame + #inflammation and basically means each one feeds the other in our bodies. 

We can feel so much shame and guilt for how we look, what we require for self care, what we need from our loved ones, how we feel when self care doesn’t seem to work, etc., and we can direct that negativity at ourselves. 

Sometimes with thoughts. But a lot of times with spoken out loud words, too. Whether in an attempt to make a joke at our own expense, or downright vile nasty comments about parts of us, or as a whole. 

It is heartbreaking to read on social media when others do it, and also when we see we actually do it to ourselves, too.

But words matter, thoughts matter. We need to remember that not only is it a vicious cycle of negativity causing emotional trauma, but it is also causing physical trauma. 

And all that trauma stays in your tissue, until you work through it and release it.

It doesn’t matter how much self care you do, if you use your own words against you. Think about how much better your efforts will be if you change up your inner dialogue 💜

You are beautiful. You are worth it. You are doing an awesome job living with a brutal condition.

#lipedemafitness #lipedema #lipoedema #lipolymphedema #wordsmatter