Retail Therapy for Lipedema

Happy Self Care Sunday!

Is it a rest day for you? A recovery day?

Do you ease up on all the typical daily self care items Lipedema requires, or do you find Sundays are the only days you can squeeze them all in?

Mine included Retail Therapy today. Which actually started last night (and for the past couple weeks, if I’m honest, not the buying, but the mental shopping), when my world got quiet, and the stress began melting away, I began the actual buying…

Funky new sneakers by @converse an incredibly fun purse by @studiocult.co (yea, it is a binder clip design 🤯with a cool school paper print lining), and artwork by one of my favorite artists @josielewisart 

I LOVE CREATIVE PEOPLE

I use art as therapy, something I found lots of people with chronic illnesses do, it is a way to cope,  heal, and remember that we are more than our condition.

I think retail therapy is similar. Seeking out items that attract you, and bring you joy to see, that can take your mind off stressful situations, or vulnerability you feel.

Buying funky shoes and a purse for fashion sake, is not something I have done in a while, I’m usually looking for items to make living with Lipedema easier. 

But fashion is a big part of me, it is what I went to school for, and Art is a big part of me. 

Not letting go of those parts of me is healing, and what Self Care Sunday means to me today.

6th Annual Lipedema Triathlon Followup

Bravo to all!!!  The annual event took place on June 26 at 9am, and was once again an international event, with participants from the US, UK, Australia, Isle of Man, Isle of Skye, etc.

It was a sprint distance event:

- 750M swim

- 20K bike

- 5K run/walk

I created this event as a way to help spread awareness for Lipedema, and as a reminder of the importance of staying active with the condition.

Thank you all for riding my crazy train! XO  🏊‍♀️ 🚴🏻‍♀️ 🏃‍♀️

One of the best things to come out of this annual event is the growing number of participants. All dealing with Lipedema at various stages and abilities. 

Some do just the 5K, it is always the most signed up for leg of the event, over 50 registered to participate this year. Followed by the swim with over 40 signed up, and finally the bike with 38 signed up.

Many participants this year got hooked! The post tri feeling had them feeling super proud and eager for next year’s event, many who spaced out the legs over the month were talking about wanting to work towards doing all three events back to back next year.

But completing all three events back to back is not mandatory, it is an All Or Something event, you do what you can, when you can. Seeing that lead to progressed abilities is icing on the proverbial cake.

We want everyone to be able to join us. We come up with great MODs when needed/wanted, as an example, some use their Cubii for the bike portion, in the comfort of their own home. It is all inclusive ♥️

I was traveling, so no pool access, but had an awesome peloton bike I could use, and I did (2) 30 minute rides back to back; first up was a 30 Min. Lizzo ride with instructor Robin Arzon, and the second was a 30 Min. Hip Hop ride with Alex Toussaint.

I have been using my stationary bike at home with the peloton app this year training for our event, and went from doing the 20K last year (in 5 minute intervals), to this year doing the (2) 30 minute rides! I was excited by that progress. But man, I was not use to the peloton seat, and woof my 🍑 was feeling it (a lot). I’ve heard they take a good week to break in, something I have not had to experience with my at home bike. But thankful I was.

Post race selfie…

I’m already planning next year’s event! #lipedematriathlon 

Thank you to @srymca for hosting us locally and to @juzocompression for our participant T-shirts!

#wearestrongertogether #allorsomething 

June is Lipedema Awareness: Strength Training

JUNE IS LIPEDEMA AWARENESS MONTH - as someone with late stage Lipolymphedema, strength training has been really key for me. 

It obviously improves our physical strength, our muscles, balance, etc., but by taking action, it can improve our emotional strength, too.

Lipedema can be viscous, and try on the daily to strip away our mobility, so every minute we can invest into stopping that is so important. 

Having self care routines to help our skin, or movements to pump our lymphatics is huge also, but one of the biggest improvements to my quality of life has been strength training. 

It got my core strong, and gave me back my mobility. It is what keeps me moving, even when menopause has brought on more mobility challenges recently.

And it doesn’t have to be all or nothing, even ten minutes is good, or five, or whatever you are capable of. #allorsomething - a little more today than yesterday.

Keep fighting for your strength, and mobility. Seek out whatever helps you get there. There is not just one right way of living with Lipedema.

June is Lipedema Awareness: Aqua Fitness

JUNE IS LIPEDEMA AWARENESS MONTH - one of the best things you can do is to be as active as possible, and one of the best ways is AQUA FITNESS!

We know aqua fitness provides low impact, resistance type training, it improves mobility, range of motion, and agility, and it helps pump our lymphatics!!! 

The water acts like graduated compression (which many of us with Lipedema must wear) and it is amazing for mental health, too!

It is my happy place!

I wrote a post about the depth of the water in comparison to level of compression, did you know walking in only 3 feet of water is equivalent to 67.22 mmHg (as an example, I wear 30-40 mmHg compression).

The pool is the only place I can be without compression, and get a great workout!

In review of my earlier files in the Lipedema Fitness support group, I came across a file about ALT (Aqua Lymphatic Therapy), and the Dorit Tidhar method, here is a good link: http://www.aqua-lymphatic-therapy.com/about.html to see more, it is a combined aqua fitness with self MLD (manual lymphatic drainage), and what a great combination it is!  

And here is a wonderful video showing more… 

https://www.instagram.com/tv/B9Y4YDtlNjC/?utm_medium=copy_link 

June is Lipedema Awareness: Column Shaped Legs

JUNE IS LIPEDEMA AWARENESS MONTH - a common term used to describe Lipedema legs is “column-like”.

The shape change of my legs, after the C section of my daughter in 2004, was what sealed it for me, that there was something different, something was going on with my body.

I had always had less shapely legs growing up, but after the surgery my lower legs became more column-like, and the ankle cuff more pronounced.

Sadly it would take me a lot of effort, and 3 years to finally get a diagnosis and understand what was going on with my legs.

It shouldn’t take so long. If I could have been diagnosed at an earlier stage it would have been much better, treatments would have worked better, and I would most likely have avoided the additional Lymphedema diagnosis, and symptoms.

Spreading awareness is key. Patients have lead the way to better understanding, and social media plays a big role in our ability to do so.

June is Lipedema Awareness: Pear Shaped

JUNE IS LIPEDEMA AWARENESS MONTH - one of the classic signs of Lipedema, is the Pear Shape (smaller on top, larger on the bottom).

After college I was a size 4 on top, and a 12 on bottom. It seemed like no matter what I did fitness-wise or diet-wise, my top half got smaller and my bottom half stayed the same, or got larger.

Not all pear shapes will have Lipedema, but it is an early indicator. Having an upper body that is multiple sizes smaller than your bottom half, is an indicator.

We want early diagnosis for all those with Lipedema. 

Being diagnosed late stage has been super challenging, it is a chronic and progressive disease, an uphill battle, for the rest of my life.

My wish is for better education for the medical field (currently they get about 15 minutes on the lymphatic system), so they know what to look for, so we can get an earlier diagnosis for all those with Lipedema. 

Spreading awareness is key for this! 

We shouldn’t have to become our own best resource on Lipedema, I shouldn’t know more than my doctors do.

June is Lipedema Awareness: Heavy Legs

JUNE IS LIPEDEMA AWARENESS MONTH and I wanted a way to convey what living with Lipedema feels like, sometimes a picture is worth a thousand words.

Most people with Lipedema can look at this picture and immediately know what I’m trying to convey, but those without the experience of walking in our shoes will need the words to go along with the image...

This photo captures the weight of Lipedema, the sloshing you can imagine feeling when trying to walk with heavy, fluid filled legs. June is Lipedema Awareness month, and spreading awareness so others get diagnosed sooner is so important.

It took me so long to get properly diagnosed, not only did I not know until I was already late stage 3 Lipedema, but I also had secondary Lymphedema.

I still cannot find a doctor, in my area, who knows what Lipedema is; and I have been told by a trained therapist that I, “know more than they do, that there really isn’t anything more they could do for me, that I’m not already doing myself.”

This condition is vicious. I stay vigilant with my self care treatments. I stay hopeful. 

I don’t share a lot about how hard it is to live with this chronic, progressive condition, because I try to not focus on the challenges, but this post hopefully gives you some insight, in case you have someone in your family, your friend circle, etc., that you suspect might have Lipedema.

Spread the word! Get those with the condition diagnosed sooner, so they can hopefully stay in earlier stages, and not have their mobility compromised.

Here is a great brochure to print and share...  https://www.lipedema.org/brochure