Thursday, January 18, 2024

Fight or Flight: Is Not Meant to be a Lifestyle

I’m sure by now you have heard the term Fight or Flight - if not, it is the body’s automatic response to stressful situations, it is our nervous system’s way to keep us safe. Think caveman days, do I stay and fight, or do I run away?

There are two sides to our autonomic nervous system: Sympathetic (fight or flight) and Parasympathetic (rest and digest).

Harvard Med has a great article describing the sympathetic state being like the gas pedal of a car, and the parasympathetic state is like the break.

Being in the sympathetic state is supposed to be for urgent situations - as in you see a threat, you react - did you know your nervous system starts reacting before your brain fully recognizes the threat? 

It sends hormones out like adrenaline and cortisol to get us fired up and ready. Then after the threat passes, our parasympathetic state kicks in to help us rest & digest (recover).

Living with chronic pain and/or in fear of falling (like so many with Lipedema, and other chronic illnesses do) means you are living in the fight or flight state.

Our bodies are not made to live like that.  So it becomes really important to seek ways to get our bodies into a parasympathetic state. 

Did you know humming is a great way to do this? It is wonderful for vagus nerve stimulation.

Other things to try are moving (leisurely walking in nature, restorative yoga, stretching, etc.), yawning, laughing, singing, deep breathing, even hugging - think about it, doing relaxing things is going to send signals to your body that you are safe. 

AND if you are in a parasympathetic state your body produces less inflammation! Always a goal when living with chronic illnesses.

Monday, December 11, 2023

Lipedema & Hair Loss

Next Wednesday (12/20) is the December Lipedema Patient Roundtable, hosted by @lympha_press and we always have amazing conversations and ask you for any questions you may have.

Today I received a really great question about lipedema and hair loss, and if there is any connection.

Over the years many of us in the #lipedemacommunity have shared a reduced need to shave our legs, due to less hair, but this question was in regard to the hair on our heads.

We now know lipedema can be found anywhere in our bodies, including in our heads, and we have begun to see the term #glymphaticsystem popping up more and more lately (lymphatics in the central nervous system) - so it would seem that yes, there is a possible connection.

Do you have lipedema in your head, and if so, have you noticed any hair loss? We would love to have you tune in next week, and share your experience with us in the chat.

Registration is required to participate/watch live. If you can’t join us live, we would love your input in the comments, and I will share it live.

I did some initial research and found a condition called #lipedematous scalp - a rare disorder characterized by increased thickness of subcutaneous tissue of the scalp, which can cause hair loss. The terminology is quite similar and has me asking so many other questions. 

Hope you can tune in. Thank you!

#lipedemapatientroundtable #lipedemafitness #lipedemahairloss #hairloss #lipoedema #lipolymohedema #lymphedema 

Friday, November 10, 2023

WHAT’S ALL THE BUZZZ W/ ZEPBOUND: and can it help Lipedema?

Zepbound is all the buzz, because the FDA just approved it to be used for obesity. 

The name is new but the medication is the same as #mounjaro - which was approved in 2022 for the treatment of type 2 diabetes. 

This may sound familiar, back in 2017 the FDA approved #ozempic for type 2 diabetes, and then created #wegovy which was FDA approved in 2021 for obesity.

But why are we talking about these weight loss drugs on a #lipedema page, when we have been told (and many have tried everything under the sun) and found weight loss medications do not typically work for lipedema. 

Because many lipedema patients who are taking these meds are finding they get pain reduction and shrinking of their fibrotic areas. 

Like everything else we have found, it doesn’t seem to work the same for everyone. But this step opens up options and competition - these medications are rarely covered by insurance for obesity diagnoses, and the out of pocket cost is over $1000 per month. Competition is a good thing.

I have not taken these meds personally, so I have no personal insight but I am very curious on the #antiinflammatory and #antifibrotic properties you may be experiencing. I will be addressing with my doctor at my next annual physical.

I also hope it inspires research on these medications and their effects on lipedema bodies.

Sunday, October 22, 2023

DIY Halloween Costume: Rhythm Nation

I love Halloween, always have, always will.

I remember the cheap plastic costumes we had as kids, not just the mask was plastic, but the costume itself was also plastic, I still remember sweating buckets walking around trick or treating.

And when we had no money for those costumes, we (or our parents) made them, a.k.a. DIY (do it yourself).

Pillowcase or old sheet ghost, fortune teller with mom’s scarves and hoop earrings, or a cat face drawn on with black eyeliner, after I blew a whopper of a bubble gum bubble through said cheap plastic cat mask mouth opening one year, making the mask totally unusable.

That love of DIYing a great costume has never left me, which is why I am so grateful for the monthly LIPEDEMA PATIENT ROUNDTABLES, where we log onto zoom in costume every October.

This year’s costume was inspired after a Peloton Artist Series ride featuring none other than THE Janet Jackson (highly recommend this ride from 9/28/23 with trainer Emma Lovewell).

Growing up I wanted so bad to be one of Janet’s RHYTHM NATION backup dancers, practicing alongside the video whenever it came on MTV. Well this year, that dream (somewhat) came true.

Here is how it was done for around $80, and several hours (and it could be made for a lot less, depending on what you find in your closet and/or around the house)…

  • Baseball hat embroidered with the 1814 emblem - from Rockatee here for $24.99.
  • Black mock neck tunic - I lucked out and found one on clearance at Torrid for $15.94.
  • Black leather dog leash from Amazon for $9.90 - old handbag straps or ribbon would work.
  • Stainless steel chain from Amazon for $3.99 - I should have looked in my jewelry box.
  • Metal buckles for $8.99 - could have repurposed but was happy to find a pack of 5 under $10.
  • Leather gloves for $11.99 - I need new gloves this winter, so went with ones I would wear after.
  • Small sheet of metal for $6.47 - swapped out for cardboard.
  • Hoop earring and old silver work key I already owned - no cost.
  • Art supplies I already owned - no cost.

Notes: 

The metal I tried cutting into the 1814 emblem did not work. It was really hard to cut with my husband’s tin shears, and the cut edges were way too sharp. This is when I repurposed the cardboard from a small box that had come in the mail. Not only did I use it to create the 1814 emblem on my chest, but also the “riveted” pieces on my gloves (the rivets were painted hot glue dots in each corner).

Instead of sewing the buckles on the tunic, to more resemble Janet’s jacket, I added them to the right side chest embellishments - on zoom you wouldn’t have seen them if I sewed them on the sides of the tunic, so I modified the look, and really like how it came out. The piece was heavy with the metal buckles, so I attached the leather straps to the shoulder seam of the tunic, and in the back. I did the same for the 1814 chest emblem, as instead of cutting the silver chain, I left it intact and just taped it to the back, which added weight to that side as well. The stitching in both places held up during the zoom call. But if I wear this out on Halloween, I’ll tack it down even more.

These buckles and 1814 embellishments could also be added to any black top, jacket, dress, etc. that you already own, to save some money. I really liked the tunic and planned to remove the embellishments and then wear it after, so I was fine with buying it, and it was on clearance. The leather straps might be harder to source around the house, I was initially going to see if I had a broken handbag I could repurpose the straps from, but I think even black ribbon or marker could be used.

The baseball cap I really love and plan on wearing that outside of the costume, too. But you could make a second 1814 embellishment and attach to any black baseball cap you own to save even more money.

Initially I was trying to find the iconic key earring, and they do still make them, but they were $50+, so I just used a small silver key on one of my silver hoop earrings and it worked great. I thought if the key opening doesn’t fit the hoop, I could just wire wrap it, but the opening worked on the earring no problem.

It would be fun to try making this costume with only supplies on hand, like we did as a kid.

Monday, October 9, 2023

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.

Thursday, October 5, 2023

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.

Thursday, September 21, 2023

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.