Tuesday, September 20, 2022

Getting Grounded: Physically & Emotionally

Ten years ago I was at the lowest point of my life. 

Physically I lived in constant pain, I had been diagnosed with Lipedema in 2007 and followed all the advice given for self care, which sadly also included the warning that exercise could make our symptoms worse.


By listening to that advice and stopping my exercise routine out of fear, I got a lot worse. I could barely stand, let alone walk, and felt like I was watching my life slip away. I lived in constant pain and fear. I could not participate in my life, my husband’s life, my daughter’s life.


I became depressed, and in an effort to hold on to whatever sanity I had left while living with my diagnosis and progressing physical challenges, I started working on my emotional fitness.


I took writing classes, joined drumming circles, prayed, journaled, practiced meditation and even became a reiki master as a way to try to heal my body.


I figured if I struggled physically, and couldn’t take action in that way, I would become stronger emotionally.


Then my life took a major emotional hit, and I knew I couldn’t survive the physical and emotional challenges at the levels they were at, so in March 2013 I asked my husband (and CrossFit instructor) what the workout of the day was. I knew I needed to get stronger physically while the emotional side took a hit.


He asked me why I wanted to know, and I said I was tired of listening to nothing physically we could do, and I wanted to be able to get off the ground if I fell.


So many Lipedema friends had been posting about falling and needing to call 911 to get help getting up when they fell. I knew it was my future if I didn’t change something.


That was when my hubby became my CrossFit coach, and we began training to get me stronger so I could eventually get down to the ground safely, so I could then work on getting back up from the ground on my own.


Getting grounded saved my life. 


The interesting and life saving realization was that the physical training made me stronger physically, but it also made me stronger emotionally, because I was taking action. 


I was doing something, and by doing something I felt less helpless on the path I was on, in the fight against Lipedema.


Emotionally Grounded


When we look at the traditional meaning of “getting grounded”, we know it is more emotionally based, and typically means to get centered within yourself and figure out what is important to you, a grounded person is someone who is said to be mentally and emotionally stable.


When you live with a chronic illness, finding ways of staying grounded are key to your survival. The emotional side of chronic illness is equally as important, but less talked about.


Typical ways are doing things like staying connected with others (joining a support group), breaking big tasks (like all the self care needed) into smaller doable steps so you don’t get overwhelmed, focus on the one task at hand, practice gratitude, meditation, deep breathing, etc.


I found it fascinating that my getting on the ground physically was in fact grounding me emotionally.


It was one of the reasons I started Lipedema Fitness. I wanted to share that realization, I wanted to spread awareness of Lipedema, and the importance of staying active with it, I wanted to support other patients on a similar journey, and I really didn’t want anyone feeling as alone as I had.


2023 will be the 10 year anniversary of this blog, and the Facebook support group. This community of patients is changing how we are seen and treated, and now exercise is a big part of our self care, you do have to see what works for you, some forms can cause symptoms to spike, but by sharing what we are doing, what works, and what doesn't, we have learned Lipedema presents differently for each of us, and also our bodies respond differently to everything we try. 


We have to try things, see how they work, see how our bodies respond, and keep a journal if it helps, so you can remember what didn’t work, and what did. And please continue to share and spread awareness, by doing so you touch the lives of the patients and change the minds of the medical community. 


We have come so far in the last 10 years, just think how far we can go in the next 10!

Wednesday, September 14, 2022

WEDNESDAY WAKE UP CALL: Lipedema Fitness

Morning Routine - Before I get out of bed. 

Elevate your legs on pillows (should be above your heart for first three movements).

(10) Deep Belly breaths

(10) Toe Crunches - basically squeeze your toes and relax them

(10) Ankle Pumps


Remove pillows

(10) Leg Clamshell - knees bent, feet on bed, open and close your knees

(10) Knee Raises - bring bent knee up to chest and do (10) on each leg

(10) Glute Squeezes - clench your booty and then release 

(10) Bridges - keep knees bent, feet on the bed and then lift your hips up

(10) Trunk Rotations - I keep my bottom half flat on the bed and rotate the upper body slowly to one side then the other

(10) Groin Massages - tons of lymph nodes in there, this is a gentle touch,  MLD style, then I also use my fingertips spread out and rake up from thighs to abdomen, again this is not deep/painful, it is more gentle than that (trying to move lymph, not break up fibrotic tissue if that helps).

(10) Deep Breaths and then I massage around the belly button in expanding circles I go right to left. 


Then I get out of bed. I always feel better than if I get up before doing these movements.

You can modify anything, if you can’t do something then skip it, or do something similar, or do less than 10 reps. 

I don’t race through the movements, I like to do with intension, and they also don’t take very long.

This is my routine, what is yours?

#allorsomething  #wednesdaywakeupcall  #lipedemafitness

Thursday, September 8, 2022

Not Fragile Like a Flower

I remember hearing this phrase in relation to the notorious Ruth Bader Ginsburg #rbg …

… and it has been used in relation to the amazing #fridakahlo 

It resonates loudly with me, and it also resonates with those living with a #chronicillness 

The truth of the matter is, flowers are not so fragile either, maybe on the surface, but they come back time and time again…

I was reading some research on @ecowatch about scientists finding some so called “delicate flowers” (like the orchid and the sweet pea) have the remarkable ability to recover from injury. Able to bend and twist themselves after sustaining an injury to not only survive, but thrive!

As I’m healing from my own injury, this resonated with me loudly and had me thinking how much we are like those flowers, how much we bend and twist to not only survive, but thrive with #lipedema 

How are you bending and twisting?

Or are you twisting and shouting! 

“Well, shake it up baby!” However that looks to you, don’t let an injury sideline your life. Healing and all that goes into it is important, but so is seeing what else we are capable of. 

Anyone else want this on a tshirt? Think I’m turning my graphic into some @zazzle Merch!

Tuesday, September 6, 2022

LIPEDEMA FITNESS: REBOUNDING

REBOUNDING is a great way to stimulate your lymphatics! 

AND IT IS A LOT OF FUN!

You can do so on a mini trampoline or sitting on a fitness ball.

Gentle bouncing is all that is needed, and in as little as five minutes you can improve your lymphatic flow by up to 15 times!

In addition to improving lymphatic flow, it strengthens your muscles, and also helps improve your balance - and NASA did a study that showed 10 minutes of jumping on a trampoline is like a 30 minute run (but easier on your joints).

Trampolines have come a long way since I found mine (pictured) over a decade ago, now many have higher weight limits and even come with handles!

Shoes or no shoes (on a trampoline)? Great question, many thoughts on this - I prefer no shoes (great for improving balance, and less chance of damaging trampoline) but compression can make it slippery, so shoes work, too. Like everything, you have to try and see what works best for you.

If going the ball route: The size ball you need is based on your height, at 5’6” a 65cm one was recommended for me.

Important to use good alignment on the ball, knees bent at 90 degrees, feet planted firmly on the floor, spine straight and sitting on your sit bones, head over spine and eyes looking forward.  I sometimes angle my toes under the sofa or bounce in a corner to help if balance is of concern.

Friday, August 26, 2022

Lipedema Fitness: Peloton App

You know I share my peloton rides here a lot, I love them! (FYI: We have a group ride tonight at 6pm if you want to join us - I am LipedemaFitness on the peloton leaderboard). I have been using the @onepeloton app for almost 2 years now, and guess what? 

I don’t have a #peloton bike!

Did you know you can get the app without the bike? 

You can use your own bike (or even an under desk elliptical, like I’ve been using while rehabbing my knee). The bottom two pics are what I personally use with the peloton app… the #Exerpeutic 675 XLS folding bike I got off Amazon and the #cubii under desk elliptical. 

You also have access to all the trainers and all the classes, not just the cycling ones! 

Classes like #strength #yoga #cardio even #meditation and seven others to choose from.

I have even used the treadmill classes while walking in place, with no equipment at all!

You do have to modify, like I can’t stand on either piece of the equipment I use, and you don’t have all the same controls (resistance and cadence are more trial and error to match the trainer’s instructions, but coach got me setup with a #wahoocadencesensor and it helped me figure it out to an extent).

My sister has the Peloton bike and loves it! I was limited by its cost and weight limit. The stationary bike I bought was under $300 dollars with a weight limit of 400lbs. I think it has gone up some, but I have had it since May of 2020 and would buy it again… and do you see that seat!

I have no connection to Peloton, other than I am a big fan of their app, it has been a game changer for me physically and emotionally ♥️🚴🏻‍♀️

#pelotonateverysize #lipedemafitness 

Monday, June 27, 2022

Lipedema Awareness: You Are Not Alone

The Lipedema journey is a challenging one. 

Watching our bodies morph into something we don’t recognize can be scary, painful and extremely difficult to navigate.

The journey changes us emotionally, too. We can have deep depression associated with living with a chronic illness, and have to take many steps to heal (repeatedly), because it is an ongoing/progressive condition.

But there are amazing people we find on the journey with us, and that alone helps, to not feel so alone, but even more, they elevate us, they build us up, they give us new found strength, and slowly our view of our body, our condition changes, and we can find a deep live and appreciation of all our bodies do for us every single day!

I had to change my perspective because I was in that deep depression, feeling like nothing we can do (because that is what we were told, because currently no cure). 

But by starting training again I got back so much more than my mobility, I got back my soul, my essence of who I am, who I want to be, and appreciating all this life can show me. 

We get this one body, this one shot at life, and I’m not going to sit by and watch it be taken from@me, I’m going to fight like hell to do what brings me joy. It may look differently than it once did, I may have to modify how I see it, but try I will ♥️ this community gives me that strength to keep trying. 

This #lipedemafitness community lifts me up. I thank each and every one of you on the journey with lme.

Sunday, June 26, 2022

7th Annual Lipedema Triathlon Local Finishers

7th Annual #lipedematriathlon took place today and I want to thank some people…

1. all my training mates (who also participated today- woo hoo!!!)

2. @juzocompression and @lympha_press for sponsoring our shirts and water bottles

3. The @srymca for hosting us locally every year 

4. Most importantly to my coach/hubby for getting me ready every year - I couldn’t even think of taking on this challenge without you 💜

So much gratitude in all who donated and cheered us on AND all those that signup to participate each year! You are all rock stars!

The swim was more challenging than ever, since it was the first time back in the pool since covid.

The shower after pool and then getting back into fresh dry compression and clothes for the bike was also more challenging than I remember, has been a while since I’ve swam/showered/biked at the gym. I just couldn’t get dry and compression over even slightly moist skin is 🤯😫😓

The bike was more challenging, too, since I’ve been using my bike the first was off and tweaked my knee at the start of my second ride, but thankfully it eases up and I could finish the ride. It was my 200th @onepeloton ride during the #lipedematriathlon !!! That is what I have been working towards and it felt awesome to complete it during this event!

The 5K unfortunately did not happen, between the mobility and knee tweak it was a no go. But I am beyond thrilled with my performance today, so honored and humbled that I can still do it seven years later!

Time to recover! Happy Saturday all! Stay tuned for a full review with all the virtual participants!