Amy Purdy - Living Beyond Limits

For many of us with Lymphedema, we can only see the borders that the condition has created in our lives but as Amy Purdy noted in her TED talk, we can use those borders to be creative and push our lives into a direction we never thought possible. Amy Purdy is a Gold Medal snowboarder despite having lost her legs at the age of 19. She is truly a role model and proof that we are more than what our condition defines us as.

Limitations are only what you make them to be

The biggest struggle with having Lymphedema has been the feeling of limitation that results from the condition. I feel it every day from my energy level to what I can wear to running on a treadmill. Many days I define myself by these limitations just out of habit. The problem is that when you focus on what can't be done, there won't be an attempt to try something more challenging or to try to instead find success. On the days when I did not bind myself to my perception of what I could or could not accomplish, I found success and opportunities. For example, for years I wouldn't try to run because a doctor told me that I should not. When I tried a little each day to run, I ended up completing a 5k race. Instead of it making my condition worse, it did not impact it. The same thing happened when I tried spinning. The result was I was in better shape, feeling less stress and felt more control in my Lymphedema leg because I was stronger.

In the past year, I got married to a wonderful man and went on a honeymoon trip in a tropical place. I think back to one of my first posts and that was exactly what I had wanted for my life rather than hiding in my home because of shame for having this condition. I don’t think anyone can blame us for having feelings of shame or days where we don’t feel we can accomplish much because of pain but let them be passing moments so you can experience opportunities that you didn’t think possible. On this honeymoon trip, I went hiking in a rainforest with capri workout pants and my stocking showing. I got a few stares but I wasn’t there for anyone but for my husband and me to experience hiking in a rainforest.

This post came from a particularly rough week with work. I let myself feel disappointed in what I was capable of. Then I started to think about all of my limitations. The same result will happen as it did with my Lymphedema if I keep this up. If I think only of what I can’t do, I don’t even think of what I may be able to do. I don’t want to spew a ton of positive thinking clichés because positive thinking is just that, thinking. It’s not doing. It’s not getting out there and trying something for the sake of seeing if you’re good at it or capable of it, instead it’s sitting there with thoughts in your head. Positive thought will only get you so far. You have to actually go do it. You have to do things that are uncomfortable and hard. There are little rewards for easy opportunities. When things don’t go as planned or someone makes you feel less about yourself, it’s actually easier to think less of yourself. It’s a heck of a lot harder to challenge them and challenge yourself to achieve more. 

Lymphedema Products I Swear By

Hi all,

I wanted to share a fantastic product I've found to help reduce fibrosis which is the hardening of the skin and tissue, as I understand it. These little squares of sponge are amazing and have helped me to find my inner ankle bone and knee cap. I use it for short stretch bandage wrapping. Also, if you're not familiar with Bandages Plus, they are a wonderful company to order from. They have a lot of products with reasonable prices and I'v never had any issues with my orders.

http://www.bandagesplus.com/prd/152/780/Chocolate-Bars.html

Another product I use every day is this lotion, Lymphoderm Body Lotion. It helps maintain PH and reduces chances of infection. I use it on my Lymphedema leg and foot daily. It also has a cool feeling on the skin which is wonderful on our hot and swollen limbs.

http://www.bandagesplus.com/prd/40/610/Lymphoderm-Body-Lotion.html


Feel free to share any other products you've found that you can't live without!

Moving beyond the diagnosis

Last Sunday, I ran my first 5k and it also marked the first time in 5 years that I ran for 3 miles straight – the first time since being diagnosed with Lymphedema. Can I just say woooohoooo!! When I was diagnosed, my doctor and occupational therapists warned my life would be different and I heeded their advice and knowledge. I also limited myself to what my body could do because I had a medical condition. That may not have been the right approach either. It wasn't easy to get here. There were many very painful nights after spinning and jogging. When I felt that pain, I'd slow it down or reduce the number of days of heavier exercise. I didn't give up; I just slowed it down so I could work up to the level I wanted to be. Before Lymphedema, I loved running. To me, it was utter freedom. No matter what limits you feel in your life, there is no limit when you're running. I have missed that so much over the years so to me, it was one goal that I really wanted to achieve. I didn't think it was possible for so long until I started spinning. It built muscle in my legs without the impact. It also made running easier because I had muscle built up already. Years before when I tried, it was painful because I didn't have any muscle mass. I don't think running a 5k should be everyone's goal with Lymphedema. I do think working toward a goal and accomplishing it in spite of Lymphedema transformed my opinion of myself. Are there things you felt you had to sacrifice when you were diagnosed? Maybe it is time to re-assess and see what can be accomplished rather than what cannot be accomplished. I also want to add that a big reason I met my goal was through the support of my husband. He has been there through the pain and tears and he was there at my side when I was running the 5k. It was hard and it was getting painful. I was really ready to just give up. The muscles in my Lymph leg lost control and my leg started thumping on the ground. My right leg was carrying the left and I was getting tired. But then my husband started saying that we’re almost there and to hold on a little while longer. He said that I could do it, to just slow it down but don’t stop and that we’ll get there together. And we did get there together. If you feel you don’t have that sort of support, there are many Lymphedema groups out there that are a community of support. There are several on Facebook and they are such a huge support system for each other. I am also here for support if anyone needs it. That’s really why I started the blog. I am not always so great about being on top of this blog (is there a way to get notifications when people comment???) so feel free to email me at lnicho7@yahoo.com.

Summer heat and exercise

I’ve been jogging and walking outside a lot this summer because well, it’s the summer and soon it will be abnormally cold because I live in Chicago. The last several years, I avoided exercising in the summer outside because of the heat and my leg. I overcame my fear of ‘what will people think’ and wear only stretch capris now. Before, I was always wearing these long, heavy cotton black pants. My world of exercise opened up when I started wearing capris. For one, it is lighter and less hot and two, it is just so much easier to move in them. I don’t know if people stare at my leg when I’m jogging past them but it doesn’t really matter because I’m out there for me, not them. I have always found very affordable pairs at Marshalls and Forever 21. Yes, I still shop at Forever 21 and I am 30 years old. Their tank tops, workout pants and workout tanks are fantastic and better than anything, they’re cheap! Not to mention, nearly all of the pants have a pocket for your phone or I pod. I also look more stylish and it’s fun to get a new workout outfit. Something about it makes you more excited to get out there and jog or walk. If you find yourself having a hard time in the summer heat but want to exercise, try capris. Just remember when you get self-conscious who you’re working out for and it won’t matter if you think someone is looking at your compression stockings.

"Lymphedema" is only a word

There are times when I feel defeated by my Lymphedema, times where the term ‘disability’ applies to me. Some days are so painful that I am limited to lying on the couch and propping it up. Some days, it’s like the limb fatigues my entire body and I just don’t have the energy a healthy person would have. I tend to get sick often, I tend to be in pain often and I tend to feel tired often. As I’ve been exercising more, my body and leg feels stronger, the pain has lessened and I’m not getting sick as often. Spinning increased the muscle mass in my Lymphedema leg and now I’m jogging and sprinting again. So my old buddy is back, running. Now that I’ve built up more muscle, running doesn’t cause as much swelling and pain as it had before. I want to see what I’m capable of and what my leg is capable of. I’m going to train for a 5K at the end of July. A small feat to some but a giant leap for me. Wish me luck!

Summer Temper Tantrums

To many, the start of summer brings warmth, sunny days, sandals and sun dresses. My summer typically starts with a temper tantrum because if you're like me with Lymphedema, the start of summer means increased swelling and decreased comfort and clothing options. I realized I have a temper tantrum every year and it starts with getting ready to go out to bars or dinner and soon every item of clothing has been tried on, is lying on the floor and I'm in tears. My jeans don't fit the same, my foot is bigger so wearing heels is more painful and knowing what to wear to feel confident is incredibly difficult. This year was a little different as it was the first summer I’ve lived with my husband and he had a front seat to the crazy show. To his horror, I resembled a 5 year old who isn’t getting her way. It was somewhat of an eye opener to see it from his point of view. I also realized I didn’t listen to my own advice to wear what feels comfortable and don’t dwell on your swollen limb. As I tried on each outfit, I stared at my leg as if the swelling would magically disappear. Well, it won’t. But what can be done is to not focus on my leg as all of me and to dress in a way that I’m comfortable and confident. If my leg is too swollen to fit into my skinny jeans, wear the stretchy trouser pants. If my leg can’t wear heels, wear a maxi dress with sandals. The idea of going out for dinner with your spouse and friends is to have fun. Focusing solely on your flaws when getting ready is unhealthy and harmful. Instead, focus on why you’re going out, to have fun so dress however you feel best. And as I’ve realized, it doesn’t hurt to have some plan b outfits that you feel good in and will be dressy enough for the occasion. My lesson of the summer is to accept who I am and my body, Lymphedema and all, and to focus on enjoying the laid back summer time with family and friends rather than harping on my flaws.