0 comments / Posted by Sue Callison

 

Hey there, welcome to Facebook live. I'm Sue and I just want to say that I love this time that I have to spend with other people who are dealing with lymphedema like myself.

Welcome, if you’re joining me live, it’s great to have you here with me.

At any point while I'm talking if you want to add any comment or question you might have, definitely feel free to put them in the comments below.

If you are joining me on the replay, the same holds true. Anything that you want to add, comments, questions, feel free to add in the comments below. You can also subscribe so you’ll get notifications of when I'm going to be going live. I’m going to try to do this every Thursday at 10:30 Pacific time which is where I'm at, 11:30 Central time, and 1:30 Eastern time.

So on the Tuesday Facebook Live session, Marie asked me question: why I didn’t wear a gauntlet. At first my response was that I’m really not the most compliant lymphedema patient. But I really thought about that and I thought, you know, I am actually an extremely compliant lymphedema patient. I am just not compliant necessarily in the traditional way that the medical community (although they are definitely changing) has dealt with lymphedema.

Anybody who has been a part of the medical world knows medical professionals who deal with lymphedema. We can all tell that this is kind of new condition that they are dealing with and trying to figure out how to help us with.

What I thought I would share today is what I do to keep my lymphedema under control and why it’s so important. If I don’t do anything, it really affects my outlook on life -- how I feel, how I function. I have children and I want to be able to take care of them, but I’ve really learned that unless I take care of myself, I really can’t take care of anybody else.

Over the past 7 years that I have been dealing with lymphedema, I’ve realized that it’s a lifestyle change. Lymphedema isn’t going to go away as Marie pointed out, it sometimes does go underground, and you don’t see it for a while, and when you start doing the things that you need to do, to keep this under control, it rears its ugly head again.

I definitely have gone through many ups and downs when my lymphedema started to go more and more out of control, and I was getting more and more scared that I was not going to be able to get it back in control. But the thing is with lymphedema you can’t give up. You’ve got to keep trying. If one thing doesn’t work for you, then you just have to try something different until you come up your own way of managing your lymphedema.

I’ve started to share some of the stuff that I found helps my lymphedema, definitely share things that you found that help you and add it in the comments below. Today I am just going to give an overview of what it is that I do. In later facebook live sessions, we will definitely dive deeper and deeper into each of the topics.

So the first thing for me is exercising. I have mentioned it before, but my go to exercise that makes me feel best is swimming. Why is swimming the most beneficial? It’s because water has natural compression. Natural compression helps to move your lymphatic fluid. Combining natural compression with movement  is like a one-two punch. I can literally feel my body clearing up, getting lighter.

Over the years, I’ve built up to doing 22 laps a day, or whenever I can get to the pool. I do 2 laps of freestyle and 2 laps of breaststroke. When I do the breaststroke I go to the Y, so the deepest end of the pool is four and a half feet I think. When I do the breaststroke, when I come off the wall I dive down, and I’ve found that deep diving really helps to clear a lot of brain fog.

Deep diving for me is the no. 1 thing that will help to clear my head. I deep dive down and I do a couple of strokes as deep as I can skimming the bottom of the pool and I come up and I take a big breath. I think that helps the most because the deeper you go into the water, the more compression there's going to be which is going to help with full body compression. This will help to get your lymphatics going. Also holding my breath when I come up to take that big inhale, that’s another way to help my lymphatic system move that fluid.

For me swimming is number one, I try to do it as often as I possibly can. After I swim, I stretch in the pool and I’ve found stretching also helps to open those lymphatic channels. Anything I do to get myself going first thing helps me throughout the rest of my day.

If I can’t swim, I go for a walk, I do gentle exercise. I’ve found that for my body, my lymphatic system, if I push my body too hard, it actually has an adverse effect. Instead of helping my lymphedema, it triggers it more. For everybody who's starting exercising start slow. There’s no reason to jump into it, this is something long term you want to change in your life. Whether it’s going for a five minute walk, jumping on a rebounder, or swimming, it’s all helpful.

I also do some gentle strength training every week. In the future I’ll definitely go through more of the things that I do, I’m hoping for you it is a jumping off point for you to start to find what exercise benefits your body and your lymphatic system. Lymphedema affects all of us differently. It comes down to each one of us having to come up with what’s going to help our body the most. What works for me, might not work so well for you. Everybody has to find their own place, their own thing that helps them. And definitely if you exercise and it spreads your lymphedema, don’t give up on it, just dial back a little bit. Okay, so that covers exercise I think.

The next thing is eating. Before cancer, before getting lymphedema, I really didn't think about what I put in my mouth. I guess ignorance is bliss. I enjoyed eating all kinds of processed food and junk food. After cancer, after developing lymphedema, I've definitely found that what I put in my mouth affects my body and my lymphedema.

So I have tried to go to a much cleaner way of eating. Do I always do it? Absolutely not, I live by the 80-20 rule, so as long as 80 percent of the time I’m doing what I need to do, when I slip the 20 percent, it's okay. It gives me a break and allows me not to be too hard on myself and to go back to taking care of myself.

Any little bit that you do to take care of yourself really is going to make you feel a whole lot better. I promise you that. It’s just taking those first steps that are so hard.

I never would have thought that this would happen but I’ve come to love juicing and doing smoothies. I just went to Barnes and Noble and bought a book on smoothies to kind of open up my smoothie world to healthy smoothies. I feel a difference when I do smoothies and do the juices. But I’m not always good and I don’t always stick to what I am supposed to be doing, but the biggest thing is I always go back to doing it. Because I know in the end when I start to feel bad, I feel really lucky that there are things that I can do to make myself feel better.

Cooking I really am working on. I am a bad cook. I tried to make dinner for the past two nights and both of them have been, really not even edible. But I am not going to give up, I am going to keep trucking away! So if you have anything you can share with me about cooking I would really appreciate that. That’d be a huge help in my life and probably my kids’ lives.

Like I said, I try to eat clean, I try stay with fruits and vegetables. I do eat meat, I like meat. Think about the food you’re putting into your body. I do eat junk food, I try to stay with foods with minimal chemicals and processed stuff. I try to stay with the healthy, I try to eat organic.

When it comes to cleaning products, my face creams, I only use coconut oil. I do love essential oils, which is something we should talk about later as well and if you want to, I’d be happy to talk about any of that!

We’ve got a comment:

Jerry: Hi, Sue. Finally got you live! Thank you for this wonderful information.

Hi Jerry, I know I am so glad that we’re here together. I hope it helps. I’ll just take a little break and say, I hope this community grows and grows. I know just from doing this a couple of weeks, it’s really changed how I feel inside. The emails that I’ve gotten, the comments down below, knowing that there are other people out there like me, makes a huge difference. Everybody’s welcome, just keep sharing and trying to help each other live a better life. I mean in the end, this is what it all comes down to. So let’s go back to what I was talking about.

So the third thing that I do to help my lymphedema is something that I have not yet shared with anybody. In the future I am going to talk a lot more about this, and how to do it because it makes a huge difference in my life. It’s what I called “rolling.” I started it, again you know I’m very lucky I had a lymphedema therapist, I had MLD people who could do manual lymph drainage. I was going weekly for manual lymph drainage. First I was thinking, I don’t understand how this works. But because I was struggling with lymphedema, I thought I’d give it a try.

Now I understand how it works and I loved going for MLD. Let’s step back for a second, your lymphatic system is basically, I look at it as having as vacuum. You have your trunk, which is basically like your vacuum bag. All near your skin, your arms, your legs, your head, those are all the areas that suck in the fluid to bring into that vacuum bag. And so if the vacuum bag no. 1 is not cleaned out, then it’s going to be a lot harder for the other parts of your lymphatic system to suck things in.

But the most important part after your trunk, is your superficial lymphatic system. That’s the part of your system that lives right underneath your skin. That part of your lymphatic runs on very, very low compression or very, very low pressure. So it’s very easily squished.

When you go for MLD or lymphatic drainage massage, first they tend to clear out your trunk so that your body is able to take in the fluid that they are going to move from the affected area. It’s a very light massage because what they are doing is manually manipulating your lymphatic vessels to take in that excess fluid that’s trapped in your tissues. They also move fluid that might be in an area that doesn’t have many functioning vessels to other areas that might have vessels that can help take in that fluid. Based on that whole principle, and the fact that I couldn’t go for MLD every day, I decided to try to figure out ways that I could do it.

So here is the no. 1, and I am going to worry before I show you this, it looks like a torture device. But it’s not, it’s one of the most incredible ways I have found to help myself everyday stimulate those lymphatic vessels and to help move fluid around so hopefully it can connect to vessels that can take in that fluid.

Okay, so don’t be scared when you see this. Okay here it is. So what is it? It has individual little rolling things and little spikes. I start on my stomach and I know it looks scary, but it really is not. When it comes down to the amount of pressure that you put, you know when I first did it, I did bruise myself a little bit, but I learned the amount of pressure to use to help get that fluid going. Doing this in the morning is better than any cup of coffee or anything that you can do to get yourself awake and going. So I will use that on my body.

I will do this later when I am actually standing in front of the mirror in the bathing suit and do my entire routine so you can see how it works and what it does. So after I do that I have other rollers that I use. I have this little one, and it’s soft and it’s got little soft round nubs and I use that for my problem areas which is like my arm here, I use it on my tush, on my thighs, on my stomach, on my back.

Just recently from moving, I talked about before, and not taking care of myself, I have little episode of fluid pooling in my lower back. I’m definitely using that roller on my lower back to try to help keep that fluid moving around and getting it to vessels, and helping vessels take in that fluid. Another one that I use, is a Jade roller, it has little spikes and I use this on my hand and I use this on my face. I bought them on Amazon what we will try to do is get a package together of all different rollers, I will look on Amazon to see if I can find the links to what I use, and put them down here in the comments.

So this roller I use on my hand, on my face and on my scars. Scars can be a real problem for lymphatic flow, and that again we will touch on later. So those are the areas that I tend to use with this roller. On my hand I just roll, roll, and roll. I roll in between my fingers, I just roll like this. Just instantly when you roll you get a cool feeling, you can just feel things getting lighter and moving. It's just amazing how this little roller can manipulate and can help my lymphatic system function better.

Every morning when I get up for shower, if I don’t do all the other rolls, I roll my face; you know I just love the feeling. And how do you know it's working? I know it’s working when I feel it behind my nose. I feel it start to drain, as soon as I feel my nose draining, that’s how I know my lymphatic system is starting to, get motivated and get going.

Another thing for my hand like I said, I am desperate not to wear gauntlets or gloves and even if you have swelling in your hand, I can pretty much guarantee that all of this will help you, and will help reduce that swelling. As much as I can guarantee anything I guess with lymphedema. But it’s definitely worth a try.

And this I roll my fingers, and the funniest thing is when I roll my fingers, you know what I can feel? I can feel the snot running down the back of my throat, and I know that sounds gross, but to me, that’s like music to my ears because I know things are working and I am going to feel better.

Oh this one is dry brushing. I know people talk about dry brushing but this is actually a rubber brush, and I found that it has a nicer grip and a nicer feel. I don’t run the risk when I see those bristles there, and I’ve tried them, sometimes they are little abrasive, and getting any cuts on lymphedema affected areas puts you at a risk for possible complications such as cellulite. So this definitely does not put you at risk for that and it feels really, really, really good.

The other thing that I do is I facersize. I do all kinds of things every day, whenever I get the moment to help my lymphatic system get moving and function to the best of its ability. All of this is what I have found has helped me to keep my lymphedema at bay.

Sometimes I do have to say that it’s like Groundhog’s Day and that sometimes it can get very depressing and discouraging but I really learned from over and over of not doing it, that it's better to do it. By the end of the day I feel it all again, I know it's still taking hold, so every morning I have to do it over and over again.

I think that’s the discouraging part of lymphedema that can make you take a break from managing it. It’s something that you have to do every day, but even if I don’t do it every day, I give myself a break. Even if I can do just one or two things to try to help myself feel better, I do it. And it does, in the end it makes me feel better.

Even if it’s just taking 5 deep breaths, where I take big belly breaths, just doing a couple pumps in my collarbone, right behind your collarbone here are your nodes, and they are the one that dump lymphatic fluid back into the circulatory system etc. But I can promise if you just take your fingers right behind your collarbone and you just do a couple pumps, that alone is going to help you feel better.

In my ebook I talked about doing self massage. Any self massage you do, it doesn’t have to be what the professionals or the lymphedema therapists say, to stimulate your lymphatics is going to make you feel better and move fluid. So start somewhere.

So that was rolling. Definitely in the future I will go in front of a mirror and show you my entire routine and we will get together the collection of what you can purchase yourself to try. Like I said in the beginning, the first time I did this one, I did it too hard and I bruised myself but I still felt so much better. So if in the beginning when you start anything new, it’s going to be kind of uncomfortable, and it’s going to feel weird. Just don't give up, keep trying things until you start to really feel a difference in your life. The human body changes really slowly, so if it's not getting worse with whatever you're trying, then keep going, because over a period of time, that actually might start making you feel better and better and better. But anything that does make your lymphedema worse, either dial it back or change its direction. Decide what’s going to be best for you.

Ok let’s talk about the final thing that is really important for all of us dealing with lymphedema which is garments. Garments for me are a really important part of maintaining all the hard work I do through exercising, the rolling, the eating to keep my body and to keep my lymphedema under wraps. Compression is going to be a really individualized part of the lymphedema treatment.

For some people who are not able to move around so much, traditional compression or any of the alternatives, whether it’s wrapping of course, there’s all kinds of velcro ones, there’s all different ways that they have come up with to help people who need the heavier compression get what they need. For some people that compression is going to be what is going to be your follow up to any kind of exercising, stretching, rolling that you do to help maintain those gains that you're getting through doing all these other lifestyle changes.

For me, I’d say the traditional compression, because my arm filled pretty rapidly, was not beneficial. That's what led me to discover the Solidea Active Massage, that has been really a lifesaver for me. It’s been a lifesaver for me because of the way that the garments work. It supports the areas where I have lymphedema and where I’m affected, which is my arm, my trunk and sometimes in my legs. It works to keep those lymphatic vessels that I'm working really hard to help keep going, keep going. For me the Active Massage is a really great follow up for all of this way of supporting my lymphatic system.

I did get questions about the garments so I will keep trying to talk about them more -- what they are and what they do. But the quick and dirty about them is they are lighter compression than traditional compression garments. A lot of people are afraid of the lighter compression but what makes a difference, and I should have brought a garment, but I don't know if you could see it. But what makes the difference is it has this bridging pattern.

And there you go, you can see how it makes that ridging in my skin, so with the ridging what happens is the lighter compression and those ridges, work well with movement. Definitely wearing them while you’re working out, while running errands, things like that, can really make these garments beneficial. Basically it works on the same principle as the rolling, the same principle as MLD. The lighter compression, those ridges, help stimulate those superficial lymphatic systems to do its job better. The longer I wear it, the more these garments are going to help with that.

That’s all for today, if you like this, if you think this can help anybody that you know, share it, tag people in the comments below, subscribe, tell other people to subscribe. I really just want to grow this community because I'm finding out how beneficial it is to have this opportunity to be with everybody.

There is 15% off during the month of October in honor of breast cancer awareness month, simply enter HOPE15 in your shopping cart at solideamedical.com. Take a look at the garments, if you have any questions about the garments and what would be right for you, feel free to email me at Sue@mylymphedemalife.com I will definitely get back to you because we’re here to try to help each other, help ourselves feel better.

Learn more about Lymphedema

What is lymphedema? Are you at risk? Can it be prevented? Get the facts so you can take care of yourself! 

Click here to download the FREE eBook
What I Wish I’d Known: Lymphedema and Cancer
written by Sue Callison, daily wearer and founder of SolideaMedical.com

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