Sunday, April 11, 2021

Pool Replacement Idea for Lipedema

If you are anything like me, the pool is your happy place.

Even before learning I had Lipedema in 2007, and finding out that being in a pool was one of the best things I could do for my symptoms, actually one of the only physical activities suggested back then, I was (and remain) a mermaid at heart.

Which made the global pandemic even harder, as not being able to get to the pool for over a year, due to closures and fears of exposure to Covid-19, my legs took a big hit. But even more than that, my spirit took a bigger hit. 

Emotional fitness is one of the challenges of Lipedema, and at a time when we all needed extra emotional healing, to not have the pool as a resource, was only adding to the difficulties of living with Lipedema.

The pool has always been more than just a workout, or a fun physical activity to help my legs; it is more of a spiritual thing for me - soothing, healing, uplifting, I can literally feel the weight of my world fall away as I would ease into, and glide across the surface.

I love it so much, when I clorox the kitchen sink I usually drift off to pool memories, the scent alone takes me to my special place (yep, I'm that person who likes the smell of bleach, but almost purely because it reminds me of the pool).

My husband and coach could see the changes to my spirit, and to my legs, as the months went on. He brought up my rebounder (mini trampoline) from the basement, which did help to keep the fluid moving, and I also made sure I had my compression (and sneakers) on every day. Which can be an easy thing to brush off when working from home.

But the spiritual component was still missing.

My husband is not one to give up easily. He kept trying to think of ways to get me into the water, and as a huge gesture of love, for our anniversary last fall, he purchased us an inflatable hot tub for the backyard!

How romantic, right?

By the time all the components arrived, there were only a few weeks to a month at best before our winter would be starting, and past experiences with closing up inflatable pools, made me suggest we put off setting it all up until the spring. 

Reluctantly he would agree, but went forward with getting the surroundings ready, and here is where the fun began...

Our property butts up to several neighbors in our backyard, and finding an oasis, a place to add to the soothing nature that is a hot tub, presented some challenges, especially given our budget was tight.

The first item he put up was a large portable shelter, like the type you can use to keep your outdoor equipment or even your car protected! We went with a smaller 10'X10' model and it was under $200 off Harbor Freight; the hot tub fits perfectly inside, with room for the heater, motor, etc., plus extra space up front by the door for a couple cubicle style storage bins on either side, that are being used for towels, hot tub accessories, etc.

He used the shelter for storing some of our workout equipment, and all his bicycles last winter, and it even had enough space for him to have his bike repair stand inside, where he could tinker all winter long.

But before he added anything to it, our daughter decorated the space and set it up for a Halloween Fright Night sleepover with some of her friends. Big hit!

As the weather was warming up, he cleared the shelter and he and my daughter plotted the perfect location of the hot tub and the two of them ensured the ground was level (a step not to be overlooked, something we learned with our prior inflatable pool days when our daughter was younger).

The hot tub he went with was an Intex 6 person model (the same manufacturer as those inflatable pools we used to get). It is 85"W X 28"H, and at first we discussed what steps/ladder we might require to ensure I could get into/out of the tub, but we found we didn't need anything, I can step over the edge and easily get in and out, with a hand on one of the storage cube stands (or a loving husband's hands). 

Here is my Amazon Affiliate Link for the Hot Tub we purchased. It is under $1,000, which is not entirely cheap, but way better than any other option we could come up with, and they have smaller sizes for even less. As an example, we looked into a swim spa, and found out they can range from about $10,000 - $30,000 (which is quite a bit more, and still less expensive than a typical backyard pool). If you use the affiliate link provided, I may receive a small incentive, which will cost you nothing extra for using.

Now it is not comparing apples to apples, I cannot stand in the hot tub and get my deep water aerobics in tha I love so much, but purely submerging my body and the emotional healing it provides, I find it is a great  alternative. Not to mention being in 2.5 feet of water is equivalent to about 45 mmHg of compression (as an example, my knee high compression is 30-40 mmHg, so it is very similar to that). If you have other ideas for pool substitutes, we would love to hear what worked for you. 

For more info. on the depth of water vs. compression, you can check out the blog post and graphic I created here.

Which brings us to yesterday... we had our usual CrossFit style workout in the park, and upon returning home I immediately checked the thermostat, it was right at 87F (lower than what most hot tubs are usually set at, and even this one can go as high as 104F), but with Lipedema (and even more importantly, Lymphedema), being mindful of heat is necessary.

Heat raises our body temperature, which can cause swelling, the last thing someone with Lipedema and/or Lymphedema wants. It can also be triggering for someone who might be at risk for Lymphedema, as it can bring it on. Like with everything Lipedema, you have to try things out for yourself and then take time to see how your body responds.

I have experience with hotter water causing swelling in my legs, from my earlier days being in a therapy pool, I would have to be mindful and check the thermostat of the pool before getting in, some days it was too hot for it to be good for me. 

Typically public therapy pools can range anywhere from 89F - 96F, and anything over 90F I would not attempt. To give you a better idea of how that compares, a regular swimming pool usually runs from about 78F - 85F. So my safe range seems to be right about 87F-90F. Which is much too cold for a hot tub experience for my family, so we take turns, and adjust the heater accordingly.

Now back to yesterday, the first day for my body to be back in a body of water in over a year... I think my face in this impromptu video says it all...

 

It really boils down to your quality of life, and how you can get to LIVING with Lipedema. It can't always be just about self care and managing your symptoms, you have to make sure you are having fun, too!

Wednesday, March 10, 2021

Using a Percussion Massager on Lipedema Legs

Self care doesn’t just happen on Sundays. I practice self care every morning as part of #livingwithlipedema 

Part of that self care includes using a hand held percussion massager, to help break up fibrotic tissue after I’ve warmed up the tissue (by stretching, lymphatic yoga poses, WBV, and pneumatic compression pumping). You can learn more about my full routine in this prior blog post. https://lipedemafitness.blogspot.com/2020/06/when-i-wake-up-day-in-life-of-lipedema.html

After I’m done with the massager, I do self MLD (manual lymphatic drainage) and apply a good lotion before putting on my graduated compression garments every morning.

Video on how I use the massager can be found on my Lipedema Fitness YouTube Channel: https://youtu.be/E5dAMAzKlrE


Percussion massagers are becoming more and more a go to tool used by Physical Therapists and Sports Therapists, as well as by athletes and others looking to help in their recovery and self treatment options.

We have learned recently that fibrotic tissue is a big concern for those with Lipedema, and breaking it up looks to improve range of motion and mobility.

There are many equipment options out now, and prices have really started to come down; we use a couple styles, and you can read more about the comparison of this Wahl massager (used in the above video) and a gun style massager we bought more recently in this prior post...


I’m going to continue trying to explain more about my self care in the coming weeks, and include more videos, let me know what you would like to see explained better.


Monday, March 1, 2021

March is Lymphedema Awareness


March is Lymphedema Awareness Month...

Many Lipedema patients have secondary Lymphedema, too.

Most self care we do is for the Lymphedema portion of our condition, moving our lymphatics is critical, and thus staying as active as possible is key!

Unlike our circulatory system, which uses the heart to pump it; the lymph system requires our muscles moving to pump it about.

Walking is a great option, so are things like deep water aerobics, aqua jogging, etc. in the pool - the water acts like natural compression.

But if your mobility is challenging, doing things like ankle pumps and rotations can really help, too. It engages your calf muscle and gets your lymph moving.

Special shout-out to my dear friend @kathrynhack for turning me into beautiful art ♥️ Check out her amazing body positive artwork... https://www.klhack.net/

Friday, February 19, 2021

Traveling with Lipedema: Self Care MODs

Traveling with Lipedema can take a toll. I brought my travel vibration plate, my optimal plus pump, and my Wahl hand held massager like I always do. 


But sometimes your new surroundings can make self care extra challenging. 


The bed is too high to use my pump like I normally do, so I tried the couch, and my left leg kept sliding off yesterday - I found when I was done I had been using a lot of muscle to keep it in place and my groin was sore. Today I added a little ottoman to give it support and it seems to work much better.


We adjust, we modify, we get creative (you should see me catapult myself into the bed - it is waste high, even when using my vibration plate as a step stool) 🤣 



#nevergiveupneversurrender #justkeepswimming 

Thursday, February 4, 2021

LIPEDEMA FITNESS: THROW THE DICE FITNESS CHALLENGE


When you wake up at 4am and have a fun fitness idea, while trying to go back to sleep (or maybe I’m just missing the Casino 🎰)...

THROW THE DICE THURSDAY!

The idea is for a HIIT Tabata style workout, to come up with movements, Ex...

1. Pushups
2. Situps
3. Squats
4. Pull-ups
5. Battle Ropes
6. Burpees
7. Box Jumps
8. Turkish Getups

Then roll a dice to determine which movement you do for each of the 8 rounds.

What will your workout look like today? Don’t have any dice, use playing cards (use Ace-6), or write down the movements on small slips of paper and pull them from a hat. Just have fun!

Tabata equals eight rounds of 20 seconds of work followed by 10 seconds of rest. Each Tabata set equals four minutes. You can find free Tabata timer apps online!

Happy Thursday

Friday, January 29, 2021

Lipedema Fitness Product Review & Giveaway w/ Juzo

We will be doing a monthly PRODUCT REVIEW & GIVEAWAY on Instagram - starting this Sunday, January 31st, as part of a #selfcaresunday highlight on compression, featuring @juzocompression 

HOW IT WILL WORK:

Each month Juzo will send me an item to review here on Instagram, and we will pull a random name from all the comments on the review post. You must be a follower of @lipedemafitness  and @juzocompression to win. Then I will tag the winner in the original review post, and contact you via PM, asking for your name, mailing address, and size. I will give that info to Juzo, who will mail your item directly to you.



RESTRICTIONS/FINE PRINT:

All items will be off the shelf (OTS), meaning no custom sized garments. The winner is responsible for taking their own measurements, and determining what size they need. Juzo has coordinating size charts on their website (www.juzousa.com). Winners are limited to 1 win per year, and shipping is limited within the USA.



Tuesday, January 19, 2021

Juggling Lipedema Self Care

One of the things you learn early on when you are diagnosed with Lipedema is that it is considered a Self Care condition.

It is because the treatments are left up to the patient to arrange, to learn what works (and what doesn't), to fight for coverage (with insurance), to pay for out of pocket when not covered, to continually try new things, and to stay on top of the progression of our symptoms, as best we can.

I still remember being at the CLT (Certified Lymphedema Therapist) office after my MLD (manual lymphatic drainage) treatments were finishing up, and asking what was next, and learning nothing!

CDT (complete decongestive therapy), which included MLD, bandaging, etc., which I had been having done in therapy, had been successful, and after I reached a plateau (no more reduction to my measurements) I was fitted for graduated compression, and basically left on my own, as there were no treatments for Lipedema. Come to find out, even the CDT protocol was a Lymphedema treatment, it was prescribed because I had secondary Lymphedema to my primary Lipedema, so it was beneficial for me to have the CDT treatments.

Since then I have experimented over the years, and found many things that help my symptoms; some help ease the pain, some help to keep my lymphatic fluid moving, etc.

The first thing I found helpful was moving as much as possible, it is what started the journey that would become Lipedema Fitness, and if you have read any of my other posts, or followed me on Instagram or are a member of the Facebook support group, you probably know one of my motto's with regards to fitness is ALL OR SOMETHING!

Which is a way to remind ourselves that every movement matters, every step we take, every effort we take, matters, and helps us to stay strong and mobile. We cannot have an All or Nothing attitude, we need to modify that to All or Something.

Well the same motto holds true for Self Care, too.

Fitness is considered part of Lipedema Self Care treatments, but I cover fitness a lot, so this post is referring to things we can do outside of fitness; Self Care items we have discovered over the years that also help our symptoms. 

Some examples include Compression, Cupping, Deep Breathing, Dry Brushing, Massaging, Moisturizing, Pumping, Reiki, Taping, and Vibration. There are also others, but you get the idea.

Self Care can be incredibly TIME CONSUMING, and can be COSTLY. We spend hours (yes hours) every day trying to stay on top of our care, and sometimes it becomes overwhelming.

I've written a post that talks about my typical day here. It will give you an idea of the time commitment for the treatments I do on a regular basis.

So, how do you know what will work for you? Sadly, you don't until you personally try it. Being in a support group and hearing from others what is working for them can give you some valuable insight, but ultimately you will have to try things out, and see how your body responds.

Once you have some Self Care treatments that you find helpful, you then have to see if you can afford them on a regular basis; not just can you afford them financially, but can you also afford the time it takes to do them, and do you have the ability to physically do them, or have help to do them at home?

I have tried so many things over the years, invested a lot of time, and money, seeing how they work for my own symptoms, but I also try them so I can share with my members/followers, so the information is out there for others to find. Sharing is really helpful, so if you try something please consider sharing your experiences in a group you belong to, or as a comment on someone you follow, etc.

I consider myself experienced in Self Care, although there are so many things out there, something new is always coming up (which is a good thing), but I want to share something with you that is important in being able to Juggle your Self Care...

YOU ARE THE BEST JUDGE OF WHAT WORKS FOR YOU!

I think we need to hear that, a Self Care option might be the bees knees to someone else, it might even be very beneficial to you, but if it doesn't fit into your lifestyle, it is OK to not do it.

It might be out of your budget. It might be physically challenging to do it. It might be too time consuming. It has to work within your lifestyle to become something you can do on a regular basis, there is no reason to feel guilty if it doesn't work for you, for whatever reason.

Over the years I have played around with what I use/do regularly, I look at my ROI (return on investment), do I get enough out of the Self Care treatment, compared to what I put into it?

I find cost is an easy one to let go of, we know if something is out of our budget and we can let it go, or we can try hard to get insurance to possibly cover it, but it becomes a pretty cut and dry decision. 

Time on the other hand is harder to me, how do I justify not doing something that might help me? We tend to feel guilty if we are not doing absolutely any and everything to combat Lipedema, and I'm here to say you have to be able to let that go. Emotionally we don't have time for the guilt, we are doing the best we can.

One thing we can do is MODIFY the Self Care item... 

Just like in fitness we know MODs are our friends, they let us do things physically we might not be able to do otherwise, and MODs can work equally well with regards to our Self Care items, too. We just need to learn how to apply them.

For example, I was prescribed 30-40 grade graduated compression (that is the strength of the compression), and it was for a full foot legging style. I was fitted and my PT ordered me custom compression (because I did not fit into off the shelf full leg compression). It was really expensive, like almost $1000; and guess what? I hated it. Not just because it was uncomfortable, but because it felt like it was constantly pulling me down, and it messed with my emotions. 

We tried everything, even asked the company to modify the garment and turn them into a short and thigh highs. The company made the customizations, free of charge, it is part of what you pay for. But the new garments didn't work either, they just rolled, and slid, and didn't stay put. 

It was a long effort to try to make them work, lots of blood, sweat and tears went in to trying to make them work, but they just didn't. So I decided since my most severe swelling was in my lower legs, I would start with knee highs, and I have worn knee highs ever since. Wearing them have helped me to keep my progression at bay, if I would have kept the full leg style I can tell you I would not have worn them, and my progression would have begun immediately.

At first, I beat myself up over that decision, but over the years I have learned to let go of things that I cannot get to work in my lifestyle. I am doing what I can do, and that is enough. I don't do myself any good feeling guilty that I am not able to do more.

When I began training I was concerned that my upper legs would be painful, so I found (from trial and error) that I could easily wear a micro massaging full legging (under my knee highs), and give my upper legs some support, too. I could even squat in these leggings, where I could barely walk in the custom piece I tried initially. Finding that helped me to realize lighter compression and being able to squat did way more for me than wearing higher level compression and not moving much.

I modified my compression. I made it work for my lifestyle. I learned modifying what I was doing was more important than being miserable in the prescribed compression. And isn't that what MODs are all about, finding ways to make it work?

I consider that a MOD to the treatment itself.

Another example of modifying a treatment would be using a hand-held percussion massager. I started using them to try to break up fibrotic tissue, but some of them can be too powerful, too painful on Lipedema tissue, so I experimented with different massagers, and also how I use them. 

You can adjust the power, and change the attachment, but I also found if I adjust the angle I'm hitting the tissue at, I can tolerate the treatment better; again I Modified the treatment itself. Now I am able to add this into my regular Self Care routine, because I found a massager and a method at using it that is not too painful, and I am able to see some real results in how my legs feel.

Another way we can make a Self Care treatment work for us is to Modify the time it takes; maybe something takes too long to fit into your busy schedule, well, why not shorten the duration to something you can easily manage? 

Don't beat yourself up that you can only spend five minutes (instead of 30) on a treatment. If it works and helps, and you can easily add it to your day, you will use it regularly and see results, vs. not doing it at all because it takes too long, and you are already maxed out and stretched too thin.

An example of that would be Dry Brushing, you can really take your time and spend 15-20 minutes brushing your entire body, then hoping in the shower (which is how they suggest we do the treatment), or you can adjust that; maybe you only have 5 minutes to spare, then do 5 minutes. Maybe rotate the areas you focus on, switching up each time. However it works for you is the best way to do it.

Another time saver I just confirmed is another Modification option, which is HUGE in my book; it involves my pump; I am currently working with Medical Solutions Supplier and trying out the Optimal Plus; like other pumps the set treatment takes 60 minutes. 

Before trying this machine, I had another pump that also had a 60 minute set time, but it only did one leg at a time, so 60 minutes for the left leg, and 60 minutes for the right leg (plus the time to get in and out of the pump). It was so overwhelming, and so time consuming, that I rarely found time to use it. It was a great treatment, one that comes highly recommended, but it just was too much for me to use on a regular basis.

The Optimal Plus I am using does both legs at once (already cutting the time requirement in half); but still I don't have an hour every day (the suggested treatment is 2-3 treatments a day for those that are less mobile, and at least once per day for those who are more mobile).

During a session last week it struck me, I wondered if I could adjust the duration, like I can adjust the compression strength? I reached out to my contact and asked, and guess what, you can! 

They still suggest the full hour per day, but said it could be done 30 minutes in the morning and 30 minutes at night. Which might make the treatment something I could do more frequently, or even add an extra half session, where time permits.

So to sum up this rather long post, you can modify your self care treatments to make them work for you and your lifestyle. You should not feel guilty about doing so, either. You should feel empowered, you are learning so much about your condition, and your body, further proving you are your own best resource, so trust you!