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.

My newest obsession: spinning

I know it has been some time since I last wrote a blog entry. My boyfriend of nearly five years proposed around my birthday last May 2012 and we were married March 16, 2013. It has been a busy year with a lot of changes like a new job and planning the wedding so time has slipped away. My condition has remained about the same but I do notice that my leg is slightly larger than it used to be which probably means that I need to revisit physical therapy. One big change that I have made within the last several months is my obsession with spinning. One of the women that I’ve met over the years through Lymphedema sites told me how she enjoyed cycling and was improving her Lymphedema. I live in Chicago and am also horrendously klutzy so being on a bicycle in the streets of Chicago sounded like a death sentence. I opted for the safer gym version of spinning. Running had and still is, too painful for me. Many women with Lymphedema can jog and enjoy it so don't hesitate to give it a shot but unfortunately, I have to quit running. My leg would get very swollen and painful after running and I was having more hip pain than with just walking. That's when I decided to give spinning a shot. I started going to one particular instructor who is gifted in instructing a spinning class and plays great music like deadmau5. The workout is much more challenging than my typical elliptical routine. My body quickly got back into shape and in better shape going to spinning 3 times a week than doing the elliptical for 5. The classes are intense and past paced so you don’t feel like you’ve been working out for a long time. I also have noticed that my hip pain is nothing like it used to be. I still have flare ups but nothing like the pain I had when I was jogging. The various positions of spinning are likely what’s ideal for our legs. In spinning positions 2 and 3, you are raised up from the seat which allows for more lymph circulation than in the seated position. Another wonderful aspect about spinning classes is that you control the resistance and speed. If you start feeling pain or like your Lymphedema leg can’t keep up, you can keep the resistance low and go at a slower pace. Like always, please remember that while you are strong, you also have Lymphedema. There are good days and bad. Sometimes will be more challenging than others. Some spin classes I feel like I don’t have Lymphedema and others, my leg finds too exhausting. Just be careful with any exercise and adjust to what your leg is telling you.

Bye Bye Running

My last post was very positive about how running was really improving my leg. I was incredibly stressed out due to work and needed some positive outlet to deal with it. I therefore started to go to the gym every morning before work. I started to push myself a lot which is great but I began to compete with other runners at the gym and many times pushed myself too far. My leg was getting more swollen and pretty painful. I definitely did not want to stop going to the gym because my entire outlook on life changed and I felt much happier during the day and better able to deal with any stressor in my professional or personal life. So I ended up going back to the elliptical and/or walking. I started knocking out 5 miles almost every morning with that combo and felt much, much less pain. I do sometimes wonder if the benefits aren't as dramatic as running so I need to be better about adding in weights to my workouts. I just find it so boring! I also need to try yoga and other modes of exercise. I just find cardio so enjoyable like I am in my own little world. Couple of points I would like to make with this post. 1) Competition is great at the gym because it pushes us but unfortunately, we are not like most people at the gym and keeping up with a person who does not have Lymphedema may just not be good for us! Compete to a level of pushing yourself but always take notice of how your leg reacts and modify your workouts accordingly. If it's painful, slow down. 2) Each person has a workout that is appropriate for them. If you're not bothered by the running then continue! If you're in pain or your're swelling is worsening, find a minimal impact exercise. 3)Remind me to not be lazy about the weight lifting because I have read that building muscle in our leg is one of the best things to do.

FIVE MILES!

I have been meaning to post this all week but I hit a new milestone with my work outs! This may seem like a tiny feat to some but I did a run/jog combo with minimal walking and made it to 5 miles. Since having Lymphedema, I have been able to do a little over 4 miles but never 5 miles. I wanted to share with my readers (all 5 of you!) that I did it!!! I then worked out again the next day and could only do 3 and had to walk, but hey, I did it once so I am sure I can do it again.

Exercise pays off and the more our limbs get conditioned to it and build muscle, the better we will be at pushing ourselves even further. It is difficult as heck and I know it as I cringe through the pain on the treadmill some days but don't give up, it will pay off!!

And please - be careful and don't over do it. I have been working hard at getting to 5 miles for the past year... yes it took me a year to make it to 5 miles from 4... Gradual is key with Lymphedema and always consult your doctor if it is especially painful.

Pain = Gain, In swelling that is...

Can I just complain about how some weeks this darn leg just kicks me on my butt. I am so exhausted this week I think because the pain in my leg has been so intense. So here's to everyone that still works and deals with a busy week in spite of pain and swelling, I commend you and feel free to complain as well :)

Weak Immune System

I have never really had the best immune system. I remember when I was a kid, I would get strep throat several times a year with high fevers and always sick for longer than normal periods of time, i.e. it took me much longer to get over being sick. Now that I have Lymphedema, I notice flare ups when I am about to get sick and while I am sick and I wonder what the correlation is between having Lymphedema and a weak immune system is, if any. I know we are more susceptible to infections in the effected limb but what about illness? Are we more prone to get sick or less likely to recover quickly from illness? When I search for information on this, I only get hits back on cellulitus and skin infections. Has anyone experienced the same issues or know of any research on this? My mind starts to churn, maybe it's the researcher in me, but I wonder if certain people are more susceptible to getting Lymphedema because of something in their immune system. Or possibly, Lymphedema weakens the immune system after it develops. If the lymphatics are a system then if part of that system isn't functioning properly, wouldn't it decrease the overall functioning and strength of the lymphatic system? I'm not a doctor at all but maybe someone reading my blog will have some answers. I need to see my doctor for a check up so I will pose these questions to him. I will post more information if I find it :)

Resource Info on Lymphedema and Exercise

I found a great resource for info on Lymphedema which talks about how specific and individualized exercise should be for those with Lymphedema. Please be sure to check it out!


http://www.lymphedema-therapy.com/lymphedema-exercise.html

Acceptance

I suppose one thing that I have learned from Lymphedema is that life throws a lot at you and there is not a thing you can do about it. No matter how good you try to be or how hard you work, sometimes things happen that you can't control. No matter how many doctors I saw or how much wrapping and MLD and healthy eating and exercising, I cannot get rid of Lymphedema. It is like so many other things in life. I think one good thing that has come out of Lymphedema is acceptance. Acceptance that there are times that are really awful whether its being diagnosed with a chronic medical condition, a fatal medical condition or simply being hurt by the behavior of others. It's easy to pile on the woe is me's and throw a pity party and I have done it. The type of day where you ask God, why me? And then you're convinced you're the modern day Job. But I think that is life, a lot of disappointments and hardships and a lot of why me's. I just don't think that is all of life and that kind of thinking starts with acceptance. Everyone is entitled to a fantastic pity party... But, big BUT, do it and get it over with and move on to what you can do to make it suck a little bit less. When I realize that I can make choices to make my situation better - it gives me a reason to get up in the morning - it's what keeps me going. Well, that and coffee and sugary treats... Also, helps to have some really great people in your life that love you and are supportive like a great boyfriend, an attentive roomie and parents that listen to you.

I guess that’s my inspirational speech after a horrible day. Should I be one of those motivational speakers or what?!? Lol.

Workaholic = More Pain in my Leg

My job has been calling for longer hours than I am used to. That means less time for exercise, sleep and more time sitting for long periods of time. Luckily it is Friday and work has calmed down for now. But by now, my leg and hip (and my back) are in quite a bit of pain and more swollen than usual. I tend to have an issue sitting still for long periods of time which is good for Lymphedema but this week of sitting for extended periods has set me back with my leg.

I think at times when stress and work load is high, it is good to stand up for periods and take a break from sitting. Rather than emailing a coworker, get up and go talk to them or stand next to your desk for a bit.

Also, that thing you have your butt on for long periods of time? Your chair...matters. I have been working from home and so sitting on a wooden stool (kitchen table) working 12 hour days and that is part of the reason my leg is more swollen and in pain. I need to invest in a desk and a good work chair for when I work from home.

So, even though life gets busy, there are always little ways to keep your Lymphedema in check. I will hopefully do better myself with that.

Staying motivated

I feel like life has been handing me a few lemons lately so what did I do last week? I went to the gym twice and sat on my butt and whined the rest of the week. Really healthy and motivating huh? Staying motivated to go to gym or exercise when life gets busy or crappy or even when it doesn't and you just lose motivation is really hard. So how do you keep it up?

I think most people go through this, even athletes; at least that is what I tell myself to make myself feel better... But how do you keep up the motivation when you have that extra obstacle of Lymphedema. It could have been stress on Thursday but my body, leg and hip ached so badly I went straight home and got into bed. I am not sure if going to the gym would have helped but it probably would have helped if I had just gone for a 20 minute walk. I worked late on Friday and instead of going on a run or walk, I just walked to the red box. Saturday I finally got myself together and did 90 minutes of cardio on the treadmill and in the pool. Here I am on Sunday and I don't want to repeat last week but I feel that unmotivated bug creeping back in (because the darn thing bit me today – grill with friends or exercise, well you see which won out).

I wrote my workouts down for the week so I am thinking I will stick to it. Possibly just writing this post will make me stick to it. My Lymphedema isn't going to magically disappear with my butt on the couch. It won't disappear in the gym either, but the swelling and pain will be near nonexistent if I stick with my exercise and healthy eating. New week = better focus on my priorities.

Improvements

Finally, my leg is back to normal! The swelling has gone back down and I am back in the gym doing 4 miles! I actually read in one of my Lymphedema books that a woman whose swelling became so severe she was going to have to be put in a wheelchair at the age of 43. Instead she went and started back up every exercise she could do, including running. Her Lymphedema improved dramatically. I decided that I would try running again because I loved the freedom I felt running years ago. What was the worst that could happen? My leg gets more swollen? Ha, that's going to happen regardless!

So, I have started out small with 1 - 2 miles on the elliptical and then I go on the treadmill and have a jog/walk combination. I am taking baby steps and can only run 0.2 miles at a time before I need to walk due to pain or lack of strength in the leg to keep going. I am jogging at a pace of 5.5 to 5.7. The crazy thing is that my leg is near normal size at the end of the night when I run. Which is insane but it is working. I am going to continue to challenge myself and maybe one day I can be a runner again. For now, I am going to listen to my body and progress at a slow pace.

Please be careful when incorporating exercise into your life with Lymphedema. Start small and listen to your leg as it reacts to the exercise. If you do too much too fast, your swelling will increase and possibly cause pain. Look at exercise as a form of treatment. It is healthy to get your blood and lymph fluid flowing in that leg and building muscle helps move the fluid BUT go at a pace right for you.

Complications of Lymphedema

As I have said before, there are good days and bad with Lymphedema. On occasion, there are not just bad days but bad weeks. It becomes frustrating and then disappointing as you feel attacked by the Lymphedema-as though it is taking over all aspects of your life due to the both physical and mental problems it can cause.

I felt like I was getting back to the old me before the Lymphedema about a few weeks ago. I was doing 4 miles at the gym on the elliptical and walking on the treadmill and I was weight lifting. I was at the gym 4 times a week and loved it. My leg started to feel much better. Then what seemed to come out of nowhere, my hip, abdomen, and thigh became incredibly swollen that sitting was painful and I was walking with a limp again. The Lymphedema seemed to take over my life last week. Pain set in and by Friday, I was exhausted from the pain that could not be alleviated with IB Profen. I wasn't myself because I was so tired and in so much pain. I was irritable and no matter what I did; elevate, MLD, etc. the pain and swelling would not minimize.

Today, I feel better but went to the doctor to get checked out. I may have an infection but it may be something else so I am getting prepared for another witch hunt as I am referred form doctor to doctor as each scratch their head at my condition. It took nearly a year to get a correct diagnosis for Lymphedema but now that I have the diagnosis, when a complication arises, they still don't know. There is just too much that doctors don't know about Lymphedema and the complications that occur as a result of the condition.

I try to stay optimistic about it all because honestly there is no choice, I cannot choose to wake up tomorrow and not have Lymphedema. The swelling, discomfort, pain, complications, tiredness, limited physical ability etc. will be with me for a lifetime. So I could either whine about it or just ignore it and that usually works. Usually. But as I felt worthless over the weekend, tired and in pain, unable to do the things I usually do on weekends, I spent the time lying in bed and on the couch and I absolutely hate wasting my weekends like that.

I am not even sure what is the point of this post other than to say how frustrating and upsetting it is to have this condition and that sometimes are harder than others. I am just hoping that whatever is wrong with me will improve soon so I can get back to feeling like myself again.

Call to Fellow Lymphies: Information on Treatment Globally

Why is the United States so behind in Lymphedema treatment and outreach?

From what I have found on the Internet, the UK and other countries are more advanced in treatment and awareness of Lymphedema. Could all of my fellow Lymphies send me information on your experiences with finding treatment (proper treatment), any obstacles to finding such treatment, costs of treatment, level of education of the individual who treated you (M.D., Nurse Practitioner, Nurse, Occupational Therapist, Physical Therapist, etc.).

What did your treatment entail? How did you feel about the treatment?
I am thinking this could be a part of something larger than my blog. Perhaps a publication? A call to step up treatment practices…

Let’s educate ourselves on our experiences and push for more treatment options, better treatment facilities, more specialized training for treatment programs, etc.

Please share this with any other Lymphedema networking you are a part of! Thanks in advance.


Also, great resource for those in the UK:

http://www.lymphormation.org/associations.php#6

Update on Swelling and Fitness Goals

Alright, I am days away from new and improved compression stockings. My doc moved me up to 40 to 50 for the compression grade. They should be coming in the mail soon and I am anxious to see if they keep my swelling down. I recently bought new wraps and have been better about the manual lymph drainage so I have noticed a phenomenal difference in the mornings, just not at the end of the day.

I also have increased my fitness goals at the gym and am now completing miles in much less time (on the elliptical). I range anywhere from 10.5 minutes to 11.5 minutes per mile. My ultimate goal is to get to 10 minutes per mile so I can knock out 3 miles in 30 minutes and then walk the 4th mile on the treadmill.

And how am I doing with my diet? Well I have completely cut out soda, iced tea etc. I do drink gatorade or powerade after the gym some days when I feel dehydrated. I have also cut out the sugar from my coffee and now use Splenda which really does not ruin the flavor of my coffee! I am still battling my addiction with cookies and candy. One day at a time, right?